9:00 a.m.
Not sure if it's the stress of the labs coming back so bad, or the chemo in 4 days, or just a coincidence but Lori woke up today with a migraine. She really hasn't had one for a couple of weeks. I hope she caught it in time and it doesn't keep her down for a couple of days.
5:00 pm
Looks like she caught it in time. She has slept most of the day but she didn't seem to have the killer headache.
Thursday, February 24, 2005
Wednesday, February 23, 2005
WOW - what a month part II
The Friday after the Chemo treatment we had a Doctor visit with the Rheumatologist. She gave Lori a shot in the hips for her pain. She said it was bursitis in the hips that was causing the pain (just what Lori needed – another “condition”). Other than that the Dr. didn’t do or say too much except see you in 3 months. It was our second visit with her . . . the jury’s still out. We decided to try her based on the fact that she is the medical director and sits on the board of directors for the Greater Florida chapter of the Lupus Foundation. We’ll see how we feel after the next visit.
The shots in the hips seemed to help Lori a lot. She was also hoping the chemo treatment did something good. Dr Tumlin had said that he was expecting better Labs the next time he saw us.
Lori had some pretty good days over the past three weeks. She also had some pretty bad ones. Most were decent. It was very encouraging. She has however had some troubles with her stomach. We thing it is related to her swallowing air when she uses her CPAP machine at night. Her right eye also gets swollen quite at night – not really sure why – think it’s the CPAP machine again.
She has gained quite a bit of weight in the past month. Her ankles and feet have really swollen up too. Yesterday we got our copy of the labs for Monday’s treatment – not good
You can look a few posts down for more details but her protein in the urine was 7911 mg last month (should be <150mg). This month it was supposed to be less . . . it was not . . .it rose to over 11,400mg!!! We have no idea what this means. Hopefully we will find out on Monday.
Her total Cholesterol has also risen from 240 last month (high) to 340 this month with her LDL (the bad one) over 218. Her white blood count is too low. Her Protein and Albumin in the blood are both lower than last month. It will be interesting to see what Dr. Tumlin has to say about this on Monday.
Hopefully we will have some good news when we get back from Atlanta next week. I’ll post the results of our trip as soon as I can
The shots in the hips seemed to help Lori a lot. She was also hoping the chemo treatment did something good. Dr Tumlin had said that he was expecting better Labs the next time he saw us.
Lori had some pretty good days over the past three weeks. She also had some pretty bad ones. Most were decent. It was very encouraging. She has however had some troubles with her stomach. We thing it is related to her swallowing air when she uses her CPAP machine at night. Her right eye also gets swollen quite at night – not really sure why – think it’s the CPAP machine again.
She has gained quite a bit of weight in the past month. Her ankles and feet have really swollen up too. Yesterday we got our copy of the labs for Monday’s treatment – not good
You can look a few posts down for more details but her protein in the urine was 7911 mg last month (should be <150mg). This month it was supposed to be less . . . it was not . . .it rose to over 11,400mg!!! We have no idea what this means. Hopefully we will find out on Monday.
Her total Cholesterol has also risen from 240 last month (high) to 340 this month with her LDL (the bad one) over 218. Her white blood count is too low. Her Protein and Albumin in the blood are both lower than last month. It will be interesting to see what Dr. Tumlin has to say about this on Monday.
Hopefully we will have some good news when we get back from Atlanta next week. I’ll post the results of our trip as soon as I can
WOW - What a month part I
Sorry it has been so long since I posted. It has been quite a month.
We went to Atlanta on the 31st for Lori’s 1st chemotherapy treatment. Lori did not have to stay in the hospital for three days like we thought. Instead it was a “23 hour stay” (she was there for about 30 hours).
The treatment goes like this:
6 hours of saline drip to hydrate Lori. After about four hours they add some prednisone to the IV for about an hour. A shot of Benadryl is then given to her. Around 6 to 7 hours after the start of all of this they bring in the chemo medicine. It is in a normal looking IV bag . . . except for all of the radioactive warnings and special handling instructions. The nurse hooks it to the IV and sets the IV machine to administer it over 1hr. She came in to check on Lori about every 5 minutes. After the treatment she give Lori lasix. This is followed by another 6 hours of saline drip and some more lasix. Then – its done.
Lori was pretty nervous while waiting for the treatment. We really didn’t know what to expect. The chemo was administered about 8:00 Monday night. She seemed to take it fairly well – except for the fact that she turned a weird color after about 45 minutes. Then the lasix kept her up going to the bathroom for the next few hours.
Tuesday morning I was all excited. As far as I knew when I left the night before Lori had gotten through pretty good. We planned on driving a couple of hours and getting a room for the night. Everything changed as soon as I opened the door to her room. She looked TERRIBLE. She had a killer migraine and had a sour stomach. They gave her some meds for both before I had gotten there. We weren’t leaving anytime soon.
After a few hours of Lori trying to pretend she was feeling well enough to leave they discharged her. We got in the car and headed home. It took about 20 minutes for her to start throwing-up in the car. Fortunately she was prepared with bucket in hand. After about a half hour of this she fell asleep. I woke her up at Macon to see if she wanted to find a room or keep sleeping while I kept driving. She chose the room.
We got her settled in at the Hampton and I left to get a prescription for naseu medicine filled. When I came back she looked a bit better. Just sleeping in the bed was helping. She started feeling better around 8:00 that night.
The next morning she felt better. After a few stops we made it home OK.
We decided that next time we will stay in Atlanta for one more day. This way all we have to do is to go from the hospital to the hotel.rry it has been so long since I posted. It has been quite a month.
We went to Atlanta on the 31st for Lori’s 1st chemotherapy treatment. Lori did not have to stay in the hospital for three days like we thought. Instead it was a “23 hour stay” (she was there for about 30 hours).
The treatment goes like this:
6 hours of saline drip to hydrate Lori. After about four hours they add some prednisone to the IV for about an hour. A shot of Benadryl is then given to her. Around 6 to 7 hours after the start of all of this they bring in the chemo medicine. It is in a normal looking IV bag . . . except for all of the radioactive warnings and special handling instructions. The nurse hooks it to the IV and sets the IV machine to administer it over 1hr. She came in to check on Lori about every 5 minutes. After the treatment she give Lori lasix. This is followed by another 6 hours of saline drip and some more lasix. Then – its done.
Lori was pretty nervous while waiting for the treatment. We really didn’t know what to expect. The chemo was administered about 8:00 Monday night. She seemed to take it fairly well – except for the fact that she turned a weird color after about 45 minutes. Then the lasix kept her up going to the bathroom for the next few hours.
Tuesday morning I was all excited. As far as I knew when I left the night before Lori had gotten through pretty good. We planned on driving a couple of hours and getting a room for the night. Everything changed as soon as I opened the door to her room. She looked TERRIBLE. She had a killer migraine and had a sour stomach. They gave her some meds for both before I had gotten there. We weren’t leaving anytime soon.
After a few hours of Lori trying to pretend she was feeling well enough to leave they discharged her. We got in the car and headed home. It took about 20 minutes for her to start throwing-up in the car. Fortunately she was prepared with bucket in hand. After about a half hour of this she fell asleep. I woke her up at Macon to see if she wanted to find a room or keep sleeping while I kept driving. She chose the room.
We got her settled in at the Hampton and I left to get a prescription for naseu medicine filled. When I came back she looked a bit better. Just sleeping in the bed was helping. She started feeling better around 8:00 that night.
The next morning she felt better. After a few stops we made it home OK.
We decided that next time we will stay in Atlanta for one more day. This way all we have to do is to go from the hospital to the hotel.rry it has been so long since I posted. It has been quite a month.
Friday, January 21, 2005
Review of Lab Results with Dr Tumlin
If you haven't read the previous post titled "Latest Lab Results" please do. It will tell you what is going on before you read this. This post addresses the treatment required as discussed with Dr. Tumlin over the phone.
Friday, January 21, 2005
Phone Notes - Dr Tumlin, Lori, & Myself - 9:00 a.m.
Dr Tumlin agreed that Lori’s labs were not good. After reviewing Lori’s current meds Dr Tumlin stated that the treatment is obviously not working. She is going to need Cytoxin (cyclophosphamide) treatments. This is a Chemotherapy treatment that is done once a month for six months. The goal is to get the nephritis into remission.
The 1st treatment Lori will be in the hospital for 3 days. Subsequent treatments will be 23hour stays. Dr. Tumlin said we had the option of going to Atlanta for the treatment where he can supervise all aspects of the treatment or we could find someone here in the Tampa area. He did say he knows of a Dr who he used to work with at Emory that he believed is here in Tampa. His name was Dr Steve Feindmen. Lori decided that she would like to have Dr Tumlin do it all. I agreed. Dr Tumlin seemed relieved and happy we were going to stick with him for the treatments.
Dr. Tumlin gave us the name of another Doctor we could call if we have any questions regarding treatment. Dr James Balow. (301) 496-4181. After our phone call I looked him up on the Internet. Dr Balow is the Kidney Disease Section Chief for the National Institute of Diabetes & Digestive & Kidney Diseases of the National Institute of Health. “Dr. Balow's research is focused on studies of the natural history, pathogenesis, and treatment of immunologically mediated glomerular diseases, particularly lupus nephritis and membranous nephropathy.”
http://www.niddk.nih.gov/intram/faculty.asp?People_ID=1497
Dr Tumlin tried to address our concerns as best as possible regarding the side effects involved. He does not feel hair loss will be significant. In fact he stated that others who are in Lori’s condition whose hair is falling out now (like Lori’s is) actually show less loss and even some growth with the Cytoxin. We’ll have to wait and see. The other major concern is feeling sick the day after or that day (especially since we are traveling to & from Atlanta). Dr Tumlin told us of a drug called Kytril. He said it is very expensive but if the insurance company will pay for it we shouldn’t have too much to worry about with sickness as a side effect. Again, after our call I looked up Kytril on our insurance website. It is a drug that is covered if it is “medically necessary”. We have been through this route before with some of Lori’s other meds. I don’t see a big problem getting this approved.
Lori’s 1st treatment will be Jan 31. We are to meet Dr Tumlin in the clinic at 8:00 that morning. We should be done Feb 2nd. I have to set this up with Dr Tumlin's secretary. We will set up the next treatment at that time.
end of notes
As you can see it has been a great week. So far 2005 is not what we had hoped for.
Friday, January 21, 2005
Phone Notes - Dr Tumlin, Lori, & Myself - 9:00 a.m.
Dr Tumlin agreed that Lori’s labs were not good. After reviewing Lori’s current meds Dr Tumlin stated that the treatment is obviously not working. She is going to need Cytoxin (cyclophosphamide) treatments. This is a Chemotherapy treatment that is done once a month for six months. The goal is to get the nephritis into remission.
The 1st treatment Lori will be in the hospital for 3 days. Subsequent treatments will be 23hour stays. Dr. Tumlin said we had the option of going to Atlanta for the treatment where he can supervise all aspects of the treatment or we could find someone here in the Tampa area. He did say he knows of a Dr who he used to work with at Emory that he believed is here in Tampa. His name was Dr Steve Feindmen. Lori decided that she would like to have Dr Tumlin do it all. I agreed. Dr Tumlin seemed relieved and happy we were going to stick with him for the treatments.
Dr. Tumlin gave us the name of another Doctor we could call if we have any questions regarding treatment. Dr James Balow. (301) 496-4181. After our phone call I looked him up on the Internet. Dr Balow is the Kidney Disease Section Chief for the National Institute of Diabetes & Digestive & Kidney Diseases of the National Institute of Health. “Dr. Balow's research is focused on studies of the natural history, pathogenesis, and treatment of immunologically mediated glomerular diseases, particularly lupus nephritis and membranous nephropathy.”
http://www.niddk.nih.gov/intram/faculty.asp?People_ID=1497
Dr Tumlin tried to address our concerns as best as possible regarding the side effects involved. He does not feel hair loss will be significant. In fact he stated that others who are in Lori’s condition whose hair is falling out now (like Lori’s is) actually show less loss and even some growth with the Cytoxin. We’ll have to wait and see. The other major concern is feeling sick the day after or that day (especially since we are traveling to & from Atlanta). Dr Tumlin told us of a drug called Kytril. He said it is very expensive but if the insurance company will pay for it we shouldn’t have too much to worry about with sickness as a side effect. Again, after our call I looked up Kytril on our insurance website. It is a drug that is covered if it is “medically necessary”. We have been through this route before with some of Lori’s other meds. I don’t see a big problem getting this approved.
Lori’s 1st treatment will be Jan 31. We are to meet Dr Tumlin in the clinic at 8:00 that morning. We should be done Feb 2nd. I have to set this up with Dr Tumlin's secretary. We will set up the next treatment at that time.
end of notes
As you can see it has been a great week. So far 2005 is not what we had hoped for.
Latest Lab Results
The latest lab results are in and they are not good. Lot's of out of range values this time. Of the 43 things tested 18 of them are out of range. The worst have to be the ones that deal with the kidneys.
The Protein in her urine has jumped from 4788 in august to 7911. (this is mg / 24hr - it should be <150). Her Creatinine in her blood was high and her Creatinine Clearance in her urine was low. Both are signs of her kidneys shutting down. Her heomcrit was also low - another sign of kidney failure. Her Albumin and was critically low (meaning she is malnurished) and the protein level in her blood was the lowest it has ever been.
Her Cholesterol is up to 240 (should be <200). She is on cholestoral medicine (lipitor). This is due to the Liver over producing to help compensate for the kidneys not working. Her calcium was also low this time . . . not sure why. Also her red blood cell count was low but just out of range as was her hemoglobin.
What do all these mean - bottom line her treatment is not working. We reviewed the results with Dr Tumlin. The notes from that phone call are the next post.
The Protein in her urine has jumped from 4788 in august to 7911. (this is mg / 24hr - it should be <150). Her Creatinine in her blood was high and her Creatinine Clearance in her urine was low. Both are signs of her kidneys shutting down. Her heomcrit was also low - another sign of kidney failure. Her Albumin and was critically low (meaning she is malnurished) and the protein level in her blood was the lowest it has ever been.
Her Cholesterol is up to 240 (should be <200). She is on cholestoral medicine (lipitor). This is due to the Liver over producing to help compensate for the kidneys not working. Her calcium was also low this time . . . not sure why. Also her red blood cell count was low but just out of range as was her hemoglobin.
What do all these mean - bottom line her treatment is not working. We reviewed the results with Dr Tumlin. The notes from that phone call are the next post.
Friday, January 14, 2005
As Expected . . . no more job
After 6 1/2 years of working at the Spa Lori is no longer employed there. Her leave automatically switched from Medical to Personal when her Medical leave was up at the beginning of the month. Today she got the call that they had given her position to someone else. No more Spa Membership Director for Lori. *sad*.
I took her to the Spa to get her stuff. Lots of stuff. It took four of us to carry it out. Lori got to say goodbye to the few people she wanted to. This was a good thing. We knew it was coming but its really sad now that it's here.
It looks like she will be filing for Social Security Disability in the next few weeks. We have Doctors appointments with Rhuemy, Nephrologist, & Primary in the next three weeks. Going to let all of them know and see what they can and/or need to do.
I took her to the Spa to get her stuff. Lots of stuff. It took four of us to carry it out. Lori got to say goodbye to the few people she wanted to. This was a good thing. We knew it was coming but its really sad now that it's here.
It looks like she will be filing for Social Security Disability in the next few weeks. We have Doctors appointments with Rhuemy, Nephrologist, & Primary in the next three weeks. Going to let all of them know and see what they can and/or need to do.
Thursday, January 13, 2005
The Year in Review II
Lori said I should put more than "sucked" for last year. She suggested "really sucked"
Last year was a really bad year. We started the year in the hospital trying to find the cause of Lori's fatigue. What we have 12 months later is a whole bunch of diagnosed syndromes and conditions - but no answer to the fatigue (which is as bad - or worse than it was last year at this time)
Not counting hospital Doctors we saw 12 different Doctors from Miami to Atlanta.
Lori gave around 6 gallons of blood (9 - 10 tubes once a month + hospital ).
Don't forget the half a dozen times we got to see that container in the fridge (no . . it's NOT lemonade)
She worked around 8 full weeks in the whole year. She was on leave for the last third of the year.
She now has 19 pills to take daily (20 on saturday).
And last but not least she has to wear her darth vader mask at bedtime, use a wheelchair ANYTIME we go anywhere that requires even a little bit of walking, and is in the process of retaining her hair as it falls out so she can make a wig to match her color exactly!
2004 added the following conditions and/or syndromes:
Lupus Nephritis (Feb 2004)
Osteopenia (May 2004)
Anti Phospholipid Antibodies (Oct 2004)
Sjögren's Syndrome (Oct 2004)
Reynaud's Phenomenon (Oct 2004)
Sleep Apnea (Dec 2004)
Add to that her existing conditions:
Fibromyalgia (Jan 2003)
Hypertension (July 2000)
Migraines (Jan 2000)
Rheumatiod Arthritis (Jan 1998)
SLE (Lupus) (May 1996)
and you got quite a bit to deal with.
Lets hope 2005 is a better year
Last year was a really bad year. We started the year in the hospital trying to find the cause of Lori's fatigue. What we have 12 months later is a whole bunch of diagnosed syndromes and conditions - but no answer to the fatigue (which is as bad - or worse than it was last year at this time)
Not counting hospital Doctors we saw 12 different Doctors from Miami to Atlanta.
Lori gave around 6 gallons of blood (9 - 10 tubes once a month + hospital ).
Don't forget the half a dozen times we got to see that container in the fridge (no . . it's NOT lemonade)
She worked around 8 full weeks in the whole year. She was on leave for the last third of the year.
She now has 19 pills to take daily (20 on saturday).
And last but not least she has to wear her darth vader mask at bedtime, use a wheelchair ANYTIME we go anywhere that requires even a little bit of walking, and is in the process of retaining her hair as it falls out so she can make a wig to match her color exactly!
2004 added the following conditions and/or syndromes:
Lupus Nephritis (Feb 2004)
Osteopenia (May 2004)
Anti Phospholipid Antibodies (Oct 2004)
Sjögren's Syndrome (Oct 2004)
Reynaud's Phenomenon (Oct 2004)
Sleep Apnea (Dec 2004)
Add to that her existing conditions:
Fibromyalgia (Jan 2003)
Hypertension (July 2000)
Migraines (Jan 2000)
Rheumatiod Arthritis (Jan 1998)
SLE (Lupus) (May 1996)
and you got quite a bit to deal with.
Lets hope 2005 is a better year
Sleep Apnea
On 11/30 last year we Lori went for a sleep study. As I said in an earlier post she failed it miserably. She went back for a follow up study where they gave her a CPAP machine ("continuous positive airway pressure" a machine that forces air into you while you sleep). The results of that were much better. We went to the pulmonoligist yesterday to discuss everything so far.
After two weeks of using the CPAP at home the Dr. was hoping for better results. While some of Lori's "brain fog" has disappeared she has no more energy than she had before using it. Dr Bonilla said it looks as though Lori's fatigue is not caused by the apnea but by one of her other conditions.
The CPAP does have some lovely side effects including swollen, puffy eyes; distended abdomen that almost doubles Lori over in pain in the morning; and excessive gas. The Dr. said all of this should go away with time as Lori's body gets used to the machine. We go back to her in three months.
I mentioned Lori failed the test. Here are the actual results of her first nights sleep study:
total time in bed: 442 minutes
total time asleep: 376 minutes (seems ok so far . . . right?)
respitory events showed she had 42 central apneas, 187 obstructive apneas, 64 mixed apneas (see next paragraph for descriptions), 126 hypopnea (shallow breathing), for a grand total of 419 events. That's 66.9 events every hour of sleep. Her SAT (pulse ox) ranged from 94% (not bad) down to 87% (bad). She had 15 leg movements/hour which led to 44 awakenings.
[Obstructive sleep apnea is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep. In central sleep apnea, the airway is not blocked but the brain fails to signal the muscles to breathe. Mixed apnea, as the name implies, is a combination of the two. With each apnea event, the brain briefly arouses people with sleep apnea in order for them to resume breathing, but consequently sleep is extremely fragmented and of poor quality. ]
She had 419 arousals from not breathing; 44 arousals from leg movements and 4 spontaneous arousals. She also had 20 short awakenings.
Bottom line she wakes up for one reason or another 74 times per hour!!!!!!!
The 2nd study was much better. Once they had the CPAP machine calibrated correctly and the proper mask fitted correctly Lori's sleep increased dramatically. I did not get a copy of the report so I don't have the numbers in front of me I the Dr said it was more like 6 events per hour instead of 74. Lori's pulse ox stayed closer to 97% (perfect).
Seeing these results can only mean good things for Lori in the future. While it wasn't he magic pill (again) it has too help her overall health.
After two weeks of using the CPAP at home the Dr. was hoping for better results. While some of Lori's "brain fog" has disappeared she has no more energy than she had before using it. Dr Bonilla said it looks as though Lori's fatigue is not caused by the apnea but by one of her other conditions.
The CPAP does have some lovely side effects including swollen, puffy eyes; distended abdomen that almost doubles Lori over in pain in the morning; and excessive gas. The Dr. said all of this should go away with time as Lori's body gets used to the machine. We go back to her in three months.
I mentioned Lori failed the test. Here are the actual results of her first nights sleep study:
total time in bed: 442 minutes
total time asleep: 376 minutes (seems ok so far . . . right?)
respitory events showed she had 42 central apneas, 187 obstructive apneas, 64 mixed apneas (see next paragraph for descriptions), 126 hypopnea (shallow breathing), for a grand total of 419 events. That's 66.9 events every hour of sleep. Her SAT (pulse ox) ranged from 94% (not bad) down to 87% (bad). She had 15 leg movements/hour which led to 44 awakenings.
[Obstructive sleep apnea is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep. In central sleep apnea, the airway is not blocked but the brain fails to signal the muscles to breathe. Mixed apnea, as the name implies, is a combination of the two. With each apnea event, the brain briefly arouses people with sleep apnea in order for them to resume breathing, but consequently sleep is extremely fragmented and of poor quality. ]
She had 419 arousals from not breathing; 44 arousals from leg movements and 4 spontaneous arousals. She also had 20 short awakenings.
Bottom line she wakes up for one reason or another 74 times per hour!!!!!!!
The 2nd study was much better. Once they had the CPAP machine calibrated correctly and the proper mask fitted correctly Lori's sleep increased dramatically. I did not get a copy of the report so I don't have the numbers in front of me I the Dr said it was more like 6 events per hour instead of 74. Lori's pulse ox stayed closer to 97% (perfect).
Seeing these results can only mean good things for Lori in the future. While it wasn't he magic pill (again) it has too help her overall health.
The Latest
The disabling fatigue continues. In the days since Christmas Lori has had 3 days where she could actually do something. One day she went to the grocery store for a couple of things (used one of those electric carts). The next she was well enough to go to the mall with Mike and Nikki (wheelchair - of course). The third was yesterday. We went to the Dr. The rest of the time she has been out of it.
Her hips and knees hurt 24/7 and her hands are swollen and red. Last week she broke out in the typical butterfly rash on her face. She also has these bumps on her body. The hair loss has gotten worse also.
Her medical leave has been officially changed to a personal leave. All this means is her job can be given away to someone else at any time.
All of this is taking it's toll on Lori's mindset. The CPAP machine (to treat her apnea) was supposed to give her a boost of energy right away . . . nothing. Even taking her pills is hard. When she holds her 19 pills in her hand she gags at the site of them.
With all of that said there is a bit of good news. She is sleeping better. While we can't see any real difference we know this is a good thing. Perhaps in time . . .
Her hips and knees hurt 24/7 and her hands are swollen and red. Last week she broke out in the typical butterfly rash on her face. She also has these bumps on her body. The hair loss has gotten worse also.
Her medical leave has been officially changed to a personal leave. All this means is her job can be given away to someone else at any time.
All of this is taking it's toll on Lori's mindset. The CPAP machine (to treat her apnea) was supposed to give her a boost of energy right away . . . nothing. Even taking her pills is hard. When she holds her 19 pills in her hand she gags at the site of them.
With all of that said there is a bit of good news. She is sleeping better. While we can't see any real difference we know this is a good thing. Perhaps in time . . .
Tuesday, December 28, 2004
Christmas week took it's toll
Where to begin . . . How bout with today and work back wards. It's Tuesday the 28th. 9:00 a.m. Since Lori went to bed on Christmas (around 11:30 p.m. ish) she has been awake for about 9 hours.
Last night she had all kinds of things going on including headache & sour stomach. She slept terrible.
Yesterday I woke her up at 10:00 am to eat some breakfast. I made her eggs & toast. By 10:30 she was back in bed. I checked in on her about 1:00 (ish) to see if she was going to make it to her Mom & Dad's house to visit with Jimmy & Richelle - no way. She was just too weak and achy. She came downstairs and moved to the couch around 4:00 - slept some more - then moved to the living room a bit later. She dosed on and off while we watched a movie, Had some dinner, then went back to bed. She was up for about 5 1/2 hours throughout the whole day
Sunday was about the same. We were supposed to go out to breakfast with my Mom & Dad for Mom's birthday. Lori couldn't make it. Again she hardly got out of bed to eat. Was up for about 3 1/2 hours in the whole day
Her general complaint is severe joint and muscle pain along with a "foggy head" and extreme fatigue. She says it's like the way your body feels when you get a bad case of the Flu.
I know it is related to her overdoing it the week before Christmas. Mike took her shopping Tuesday & Wednesday. He pushed her around in the wheel chair but it still took a lot out of her. Last Thursday she went out with Ricky & Jay for a couple of hours. She also went by herself on Thursday am. By Christmas eve she could hardly cook dinner.
Christmas morning we had breakfast with her Mom & Dad (I cooked - she didn't even get out of her jammies). Lori took a nap after that. at 4:00 my Mom & Dad came over for about 30 minutes and then we went to Jim's house for dinner. Got home about 10:00.
Put all of that in the mix and now we have an extremely fatigued Lori on our hands. I hope she will start feeling better today.
It is really bad that having dinner and breakfast in one day or going out shopping for a couple of hours can do that to a person. We all feel tired after shopping but we are able to finish out our day. After cooking a big dinner any one of us would say "boy, I'm glad that's over, I'm tired" but we could finish out our day. Lori isn't just feeling tired she literally cannot do anything. Just eating the dinner or visiting with someone for a couple of hours may take every once of strength she has to make it through! She then has to sleep. It's not that she wants to , she has to. If she is doing something she has to give herself two hours before the actual time to get ready. 15 minutes for a shower; followed by 30 minutes of rest to recover from the shower; 15 minutes to dry hair, make up,etc.; followed by thirty minutes of rest; a couple of minutes to get dressed; then rest until its time to do whatever she was getting ready to do. almost 2 hours to do what most of us just do without even about. This is what she goes through every day!
Sorry for the rant but there are some out there that even after all these years, all of the e-mails, Dr visits, and this log, just don't get it. It is really frustrating for us and has Lori in tears too often. end of rant
Hopefully today will be a better day
Last night she had all kinds of things going on including headache & sour stomach. She slept terrible.
Yesterday I woke her up at 10:00 am to eat some breakfast. I made her eggs & toast. By 10:30 she was back in bed. I checked in on her about 1:00 (ish) to see if she was going to make it to her Mom & Dad's house to visit with Jimmy & Richelle - no way. She was just too weak and achy. She came downstairs and moved to the couch around 4:00 - slept some more - then moved to the living room a bit later. She dosed on and off while we watched a movie, Had some dinner, then went back to bed. She was up for about 5 1/2 hours throughout the whole day
Sunday was about the same. We were supposed to go out to breakfast with my Mom & Dad for Mom's birthday. Lori couldn't make it. Again she hardly got out of bed to eat. Was up for about 3 1/2 hours in the whole day
Her general complaint is severe joint and muscle pain along with a "foggy head" and extreme fatigue. She says it's like the way your body feels when you get a bad case of the Flu.
I know it is related to her overdoing it the week before Christmas. Mike took her shopping Tuesday & Wednesday. He pushed her around in the wheel chair but it still took a lot out of her. Last Thursday she went out with Ricky & Jay for a couple of hours. She also went by herself on Thursday am. By Christmas eve she could hardly cook dinner.
Christmas morning we had breakfast with her Mom & Dad (I cooked - she didn't even get out of her jammies). Lori took a nap after that. at 4:00 my Mom & Dad came over for about 30 minutes and then we went to Jim's house for dinner. Got home about 10:00.
Put all of that in the mix and now we have an extremely fatigued Lori on our hands. I hope she will start feeling better today.
It is really bad that having dinner and breakfast in one day or going out shopping for a couple of hours can do that to a person. We all feel tired after shopping but we are able to finish out our day. After cooking a big dinner any one of us would say "boy, I'm glad that's over, I'm tired" but we could finish out our day. Lori isn't just feeling tired she literally cannot do anything. Just eating the dinner or visiting with someone for a couple of hours may take every once of strength she has to make it through! She then has to sleep. It's not that she wants to , she has to. If she is doing something she has to give herself two hours before the actual time to get ready. 15 minutes for a shower; followed by 30 minutes of rest to recover from the shower; 15 minutes to dry hair, make up,etc.; followed by thirty minutes of rest; a couple of minutes to get dressed; then rest until its time to do whatever she was getting ready to do. almost 2 hours to do what most of us just do without even about. This is what she goes through every day!
Sorry for the rant but there are some out there that even after all these years, all of the e-mails, Dr visits, and this log, just don't get it. It is really frustrating for us and has Lori in tears too often. end of rant
Hopefully today will be a better day
Sleep Study Part II
Last Tuesday Lori went for part II of her sleep study. After lots of adjustments and trying different masks, straps, etc. the technician finally got the right formula for Lori to sleep good.
He said she did much better this time.
She should have her set up soon (the Dr.'s office called yesterday). Hopefully it will start helping right away.
I will post the results of both studies when we get all of the final paperwork.
He said she did much better this time.
She should have her set up soon (the Dr.'s office called yesterday). Hopefully it will start helping right away.
I will post the results of both studies when we get all of the final paperwork.
Wednesday, December 15, 2004
Same old same old
Sleep; get up; rest; do something (i.e. take a shower); rest some more; do something else (water a plant); rest again; nap; get up; rest; do something really big (a load of laundry or make a sandwich or run to the bank or something loke that); rest; nap; get up; rest; cook dinner (yeah); eat; pass out; bed
Tuesday, December 14, 2004
Catch up time
OK. Thursday the 2nd we decided Lori cannot work any more. Since then she has not felt any better with the exception of the Friday and Saturday right after "the decision". I think there was a huge weight lifted off of her shoulders. Her lack of being able to do anything at work was really weighing on her. It was good to see that weight lifted.
I've been so busy I haven't even had time to go grocery shopping. I believe it was Sunday the 5th Lori went shopping. She went to WalMart. Once there she used one of those scooter/carts. After figuring out how to drive it she said she did pretty good. I was glad to see her use it without worrying about what other people thought.
The days since the 2nd have just shot past. For the first week Lori seemed to have a bit of energy off and on. Now she is back to feeling completly lethargic. Her joints really hurt all of the time. It takes everything she has to cook dinner. Fortunately since she left work she has not had any migraines.
We got the results from the tests she took a couple of weeks ago.
Heart: Good
Lungs: Good
Sleep study: Failed miserably!
She has to go back to do another test and get fitted for her Darth Vader mask. Hopefully this week.
Christmas is just going to be here and gone before I know it. Hopefully I will get back in the swing of updating this daily.
I've been so busy I haven't even had time to go grocery shopping. I believe it was Sunday the 5th Lori went shopping. She went to WalMart. Once there she used one of those scooter/carts. After figuring out how to drive it she said she did pretty good. I was glad to see her use it without worrying about what other people thought.
The days since the 2nd have just shot past. For the first week Lori seemed to have a bit of energy off and on. Now she is back to feeling completly lethargic. Her joints really hurt all of the time. It takes everything she has to cook dinner. Fortunately since she left work she has not had any migraines.
We got the results from the tests she took a couple of weeks ago.
Heart: Good
Lungs: Good
Sleep study: Failed miserably!
She has to go back to do another test and get fitted for her Darth Vader mask. Hopefully this week.
Christmas is just going to be here and gone before I know it. Hopefully I will get back in the swing of updating this daily.
Wednesday, December 08, 2004
Thursday, December 02, 2004
No More Work
After hours of talk and tears we decided that Lori can't work anymore. She had quite a breakdown and let a lot of things out. She just can't do it any more. It was too much - just to get 2-4 hours a day in. It was really bothering her that she couldn't put in a full day at work. It wasn't fair to the Spa or to our family.
I told Jim that she needs to go on leave again. Not sure for how long. She only has 2 weeks of "official" medical leave left before the spa can legally replace her. I know she won't be back in that amount of time . . . if she ever makes it back.
Lori had 3 tests done this week. One was a pulmonary function test. This tested the lungs to see how the air was moving. She seemed to do OK with that one . . . according to the tech that administered the test. The second one was an echo cardiogram (pretty cool). Have no idea what the results on that will be. She also went for a sleep study. Lot's of wires hooked up to all parts of her body. She failed that one miserably. When all the results are in we will go to see the Pulmonologist. Magic pill time? Probably not. In fact our experience is more along the lines of "well Mrs. Lyons . . . I don't know what was causing you cough and shortness of breath but we did find *insert name of new syndrome or disease here*"
She seems to be better today. She has a little life in her. Perhaps the weight of not having to "fake it" at work for three hours a day has helped.
I told Jim that she needs to go on leave again. Not sure for how long. She only has 2 weeks of "official" medical leave left before the spa can legally replace her. I know she won't be back in that amount of time . . . if she ever makes it back.
Lori had 3 tests done this week. One was a pulmonary function test. This tested the lungs to see how the air was moving. She seemed to do OK with that one . . . according to the tech that administered the test. The second one was an echo cardiogram (pretty cool). Have no idea what the results on that will be. She also went for a sleep study. Lot's of wires hooked up to all parts of her body. She failed that one miserably. When all the results are in we will go to see the Pulmonologist. Magic pill time? Probably not. In fact our experience is more along the lines of "well Mrs. Lyons . . . I don't know what was causing you cough and shortness of breath but we did find *insert name of new syndrome or disease here*"
She seems to be better today. She has a little life in her. Perhaps the weight of not having to "fake it" at work for three hours a day has helped.
Monday, November 29, 2004
Another Sunday - Another Migraine
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 . . .
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 . . .
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 . . .
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