You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
Hi, it's Rose with a brief update. Sue and Den went to the Lake on Thursday for their annual Kids' Week Do. I talked with Sue just a while ago, and she was having a wonderful time. She will come to St. Louis mid-week for some appointments then return to the Lake with son Scott for the weekend. Scott is coming to St. Louis on Tuesday with Brayden and Jalen. I will keep the boys while he is at the Lake. Den returns to Chicago tomorrow (Sunday) and will return next weekend.
The antibiotic Dr. Barake gave Sue for an inner-ear infection is working, and she reports her annoying ear-plugged-up sensation has disappeared.
Pete and Janet sent a card indicating they are having a Mass said for Sue's healing at Our Lady of the Snows. When Sue opened the card, she cried. Pete and Janet report that their son Kelly is doing well and the medication he is on is taking care of all his symptoms.
It's quiet here in the 'newsroom.' Sandi and Tammy, when they were here in the Spring, said their father (Brother Bernie) is called the Voice of America in the family because he communicates so well. Too well sometimes, the daughters said. So, Voice of America, if you have any news please send it on. We'll put it here. That goes for any other readers.
Lots of people read this weblog. If you want to know the statistics, just click on the icon that says, "Site Meter" and see where it takes you.
Saturday, July 31, 2004
Thursday, July 29, 2004
Wednesday, July 28, 2004
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
It's been a day of doctoring. I saw Dr. Dooley, my neurologist this morning. Up until then I was resigned to the notion that I had ALS and very down. ALS had been my suspicion for a long, long time, and I thought my suspicion was confirmed for me in my telephone conversation with Dr. Dooley a week ago.
I came away from this face-to-face with Dooley much encouraged. For one thing, the diagnosis is not certain and for another, my symptoms are atypical for the disease. Dr. Dooley examined me and found me stronger. He said people with MND (motor-neuron disease, of which ALS is one) DO NOT get stronger. I am stronger. Of course, I knew that from actual measurements of my strength at the St. Mary's Physical Therapy Center. What I didn't know until today is that getting stronger points away from ALS and MND. However, I certainly have something terrible wrong, and it is limiting me in ways I find extremely vexing and frustrating. Now, though, I am more hopeful that I can continue to improve.
Dr. Dooley and Dr. Smith (of the Mayo Clinic) do not recommend treatment now beyond rigorous physical therapy. In six to nine months we'll do a reassessment, perhaps at the Mayo Clinic again. In the meantime, I am scheduled to see Dooley only in October unless I feel a need to see him before then. If my condition were to worsen, Dooley would consider restarting the Solumedrol infusions but doesn't think they are warranted at this point. And there are side effects.
Rose, who has travelled me on this miserable journey and shared most of the physician consultations with me, is more hopeful than she has been since we left Dr. Smith's office in mid-June. The waiting has been terrifically difficult.
When I talked to Scott this afternoon, he had these words of wisdom: "Mom, isn't it better not to know what's wrong with you than to know you have something terrible?" Of course, he's right.
After the appointment with Dooley, I went to see my primary care physcian, Dr. Barake, about my stopped-up ears. This was my fourth trip there about this problem. He thinks I have an inner-ear infection and has prescribed antibiotics and a decongestant. If I'm not better in a couple of weeks, I will go see an ear, nose and throat specialist he has recommended. Also, Barake gave me a prescription for some new ointment for my psoriasis and has referred me to a different dermatologist for that affliction which I have lived with now for years.
And now we are off to see my healing touch practitioner. How in the world did I ever have time for a job?
It's been a day of doctoring. I saw Dr. Dooley, my neurologist this morning. Up until then I was resigned to the notion that I had ALS and very down. ALS had been my suspicion for a long, long time, and I thought my suspicion was confirmed for me in my telephone conversation with Dr. Dooley a week ago.
I came away from this face-to-face with Dooley much encouraged. For one thing, the diagnosis is not certain and for another, my symptoms are atypical for the disease. Dr. Dooley examined me and found me stronger. He said people with MND (motor-neuron disease, of which ALS is one) DO NOT get stronger. I am stronger. Of course, I knew that from actual measurements of my strength at the St. Mary's Physical Therapy Center. What I didn't know until today is that getting stronger points away from ALS and MND. However, I certainly have something terrible wrong, and it is limiting me in ways I find extremely vexing and frustrating. Now, though, I am more hopeful that I can continue to improve.
Dr. Dooley and Dr. Smith (of the Mayo Clinic) do not recommend treatment now beyond rigorous physical therapy. In six to nine months we'll do a reassessment, perhaps at the Mayo Clinic again. In the meantime, I am scheduled to see Dooley only in October unless I feel a need to see him before then. If my condition were to worsen, Dooley would consider restarting the Solumedrol infusions but doesn't think they are warranted at this point. And there are side effects.
Rose, who has travelled me on this miserable journey and shared most of the physician consultations with me, is more hopeful than she has been since we left Dr. Smith's office in mid-June. The waiting has been terrifically difficult.
When I talked to Scott this afternoon, he had these words of wisdom: "Mom, isn't it better not to know what's wrong with you than to know you have something terrible?" Of course, he's right.
After the appointment with Dooley, I went to see my primary care physcian, Dr. Barake, about my stopped-up ears. This was my fourth trip there about this problem. He thinks I have an inner-ear infection and has prescribed antibiotics and a decongestant. If I'm not better in a couple of weeks, I will go see an ear, nose and throat specialist he has recommended. Also, Barake gave me a prescription for some new ointment for my psoriasis and has referred me to a different dermatologist for that affliction which I have lived with now for years.
And now we are off to see my healing touch practitioner. How in the world did I ever have time for a job?
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
Hello from Geenwood. Here are some quick items before I go see Dr. Dooley today.
Friday, Den got here from Chicago in the late afternoon. Sunday he and his son and daughter went to the Cardinals game. The three of them really wanted me to come along, but I didn't want to face a crowd of 48,000 people. Chris and Shelly got home from St. Thomas late Saturday night after a great week but difficult travels. Chris came over to the house on Sunday afternoon and watched the game with me on television.
Den and I dropped Rose off at the airport Saturday morning for her trip to Chicago.
Margaret called to say that Bernie has dodged a bullet. He DOESN'T have to have the surgery on his leg. He and Maudie were in Seattle still with Sandi and her daughter but were eager to return home.
Den and I went to the Lake on Monday morning, had dinner with the Meisels that evening at Little Rizzo's, and returned to St. Louis on Tuesday afternoon.
We have no idea where the preacher had dinner on Sunday.
Margaret also tells us that Pete and Janet are coming for a visit in September. We look forward to that!
This is the plan for the coming couple of weeks. Aaron, Tiffany, and Haleigh are coming for dinner this evening. Tiffany, that wonderful hairdresser, will cut our hair. Tomorrow morning Den and I will go to the Lake for our 13th annual Kids' Week. 'Different kids' will be in and out over the next ten days. Chris and Shelly will be there both weekends, and Scott will come mid-next week. He is bringing Brayden and Jalen who will stay with their Aunt Rose until Friday, then with Sabrina for the weekend. I don't know which 'kids' I would rather be with. It's a hard choice.
Den's 40th class reunion is this coming Saturday, and his birthday is also Saturday. He will be 59. I married a younger man like Kerry and Edwards.
More from Greenwood later.
Hello from Geenwood. Here are some quick items before I go see Dr. Dooley today.
Friday, Den got here from Chicago in the late afternoon. Sunday he and his son and daughter went to the Cardinals game. The three of them really wanted me to come along, but I didn't want to face a crowd of 48,000 people. Chris and Shelly got home from St. Thomas late Saturday night after a great week but difficult travels. Chris came over to the house on Sunday afternoon and watched the game with me on television.
Den and I dropped Rose off at the airport Saturday morning for her trip to Chicago.
Margaret called to say that Bernie has dodged a bullet. He DOESN'T have to have the surgery on his leg. He and Maudie were in Seattle still with Sandi and her daughter but were eager to return home.
Den and I went to the Lake on Monday morning, had dinner with the Meisels that evening at Little Rizzo's, and returned to St. Louis on Tuesday afternoon.
We have no idea where the preacher had dinner on Sunday.
Margaret also tells us that Pete and Janet are coming for a visit in September. We look forward to that!
This is the plan for the coming couple of weeks. Aaron, Tiffany, and Haleigh are coming for dinner this evening. Tiffany, that wonderful hairdresser, will cut our hair. Tomorrow morning Den and I will go to the Lake for our 13th annual Kids' Week. 'Different kids' will be in and out over the next ten days. Chris and Shelly will be there both weekends, and Scott will come mid-next week. He is bringing Brayden and Jalen who will stay with their Aunt Rose until Friday, then with Sabrina for the weekend. I don't know which 'kids' I would rather be with. It's a hard choice.
Den's 40th class reunion is this coming Saturday, and his birthday is also Saturday. He will be 59. I married a younger man like Kerry and Edwards.
More from Greenwood later.
Thursday, July 22, 2004
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
Hi, it's Rose. Sue and I were remembering this morning one of the more unusual experiences we've shared. It happened like this. I was living in Evanston, IL, and commuting to St. Louis weekly where I stayed with the Abbotts two days while I worked. Sue helped me find an apartment in St. Louis after about a year of this lifestyle, and came to Evanston to help me bring some furniture for the apartment in a U-Haul Truck. It was winter. We drove to the west side of Chicago to pick up the truck. It began to snow. We dropped the car back at the house and went into downtown Evanston with the truck to pick up a bookcase I had purchased. Also, I had a dental appointment and was about to be late for it. Mind you, Sue had never before been to downtown Evanston nor had she ever driven a U-Haul truck, so I drove. [Actually, I had never driven one before either, but easily daunted we are not.] The furniture store and the dentist's office were a couple of blocks apart, and we could not find a place to park this U-Haul as it was rush hour. Finally, I just got out, quickly asking Sue to find a place to park and meet me. I indicated the building the dentist's office was in, and left. It was dark by now and the snow was blinding.
When I finished with the dentist, there was Sue, calmly sitting in the waiting room reading a magazine. All she said was, "It's a good thing you gave me a toothbrush that had your dentist's name on it. Otherwise, I would never have found this place." It was a big building. She had driven around until she found a place to park where she would not have to back up.
We picked up the bookcase and next day drove to St. Louis.
Sue has been to physical therapy this morning, and Mary will be along soon for lunch. More later.
Hi, it's Rose. Sue and I were remembering this morning one of the more unusual experiences we've shared. It happened like this. I was living in Evanston, IL, and commuting to St. Louis weekly where I stayed with the Abbotts two days while I worked. Sue helped me find an apartment in St. Louis after about a year of this lifestyle, and came to Evanston to help me bring some furniture for the apartment in a U-Haul Truck. It was winter. We drove to the west side of Chicago to pick up the truck. It began to snow. We dropped the car back at the house and went into downtown Evanston with the truck to pick up a bookcase I had purchased. Also, I had a dental appointment and was about to be late for it. Mind you, Sue had never before been to downtown Evanston nor had she ever driven a U-Haul truck, so I drove. [Actually, I had never driven one before either, but easily daunted we are not.] The furniture store and the dentist's office were a couple of blocks apart, and we could not find a place to park this U-Haul as it was rush hour. Finally, I just got out, quickly asking Sue to find a place to park and meet me. I indicated the building the dentist's office was in, and left. It was dark by now and the snow was blinding.
When I finished with the dentist, there was Sue, calmly sitting in the waiting room reading a magazine. All she said was, "It's a good thing you gave me a toothbrush that had your dentist's name on it. Otherwise, I would never have found this place." It was a big building. She had driven around until she found a place to park where she would not have to back up.
We picked up the bookcase and next day drove to St. Louis.
Sue has been to physical therapy this morning, and Mary will be along soon for lunch. More later.
Wednesday, July 21, 2004
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
You may remember that before Sue went to the Mayo Clinic, she had a few tense days waiting to see if her insurance would pay for the evaluation and testing there. Catrina was all over the issue and got approval late Friday afternoon before Sue was to leave for Arizona on the following Monday.
This week, Sue got reams of papers from her insurance company with the Mayo Clinic claims all marked DENIED--NO REFERRAL OBTAINED. That was worrisome only until she called Blue Choice, explained about the last minute approval, and was told the denials were a mistake and that the bills would be paid. So far, the total amount of charges for the four days at the Clinic is over $8000.
Additionally, Sue had an MRI in early June here at St. Luke's Medical Center. Blue Choice has paid ALL of that bill which was over $2500.
Thank God for Catrina! That young woman knows the insurance business inside and out--no simple feat these days. What in the world do people do who don't have medical insurance? Sue pays huge premiums because of the existing condition she brought to this new insurance coverage on May 1. Even so, she has saved a ton of money in these short three months.
Some years ago, when I was wanting to buy some term life insurance. Catrina handled the whole thing. Later when my own medical insurance premiums increased until they were over $600 per month, I again called Catrina. The insurance I had carried for 15 years was from Boeing and was with a pool of retirees. Catrina explained that a lot of companies were simply pricing their insurance high to force people off their roles. It forced me off! Catrina got me a good policy with Blue Cross Blue Shield for about half what I was paying before.
You may remember that before Sue went to the Mayo Clinic, she had a few tense days waiting to see if her insurance would pay for the evaluation and testing there. Catrina was all over the issue and got approval late Friday afternoon before Sue was to leave for Arizona on the following Monday.
This week, Sue got reams of papers from her insurance company with the Mayo Clinic claims all marked DENIED--NO REFERRAL OBTAINED. That was worrisome only until she called Blue Choice, explained about the last minute approval, and was told the denials were a mistake and that the bills would be paid. So far, the total amount of charges for the four days at the Clinic is over $8000.
Additionally, Sue had an MRI in early June here at St. Luke's Medical Center. Blue Choice has paid ALL of that bill which was over $2500.
Thank God for Catrina! That young woman knows the insurance business inside and out--no simple feat these days. What in the world do people do who don't have medical insurance? Sue pays huge premiums because of the existing condition she brought to this new insurance coverage on May 1. Even so, she has saved a ton of money in these short three months.
Some years ago, when I was wanting to buy some term life insurance. Catrina handled the whole thing. Later when my own medical insurance premiums increased until they were over $600 per month, I again called Catrina. The insurance I had carried for 15 years was from Boeing and was with a pool of retirees. Catrina explained that a lot of companies were simply pricing their insurance high to force people off their roles. It forced me off! Catrina got me a good policy with Blue Cross Blue Shield for about half what I was paying before.
Tuesday, July 20, 2004
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
O.K. We've had feedback about the difficulty of making comments. So here goes: At the end of every entry, there is a line where the word 'comments' shows up. If you wish to comment on an entry or a photo or you just wish to add your two cents worth, put your cursor over the 'comments' and double-click. It will take you to the host site, then all you need do is follow the instructions. We are very impressed with Blogspot host which was bought by Google, the MOST impressive bunch, a few months ago. It's all free, paid for by advertisers. Have you noted what shows up as a headliner to our entries? Advertisers key on certain words, like 'Mayo Clinic' and there they are!
Try adding your comments. We certainly enjoy reading them, and they are available to all the readers who come here. Blogging is an interesting world, and much easier than it looks at first blush.
Also, for those who just want to e-mail Martha Sue, simply click on the "Sue's e-mail Address" on the right side of the Blog, and you can.
O.K. We've had feedback about the difficulty of making comments. So here goes: At the end of every entry, there is a line where the word 'comments' shows up. If you wish to comment on an entry or a photo or you just wish to add your two cents worth, put your cursor over the 'comments' and double-click. It will take you to the host site, then all you need do is follow the instructions. We are very impressed with Blogspot host which was bought by Google, the MOST impressive bunch, a few months ago. It's all free, paid for by advertisers. Have you noted what shows up as a headliner to our entries? Advertisers key on certain words, like 'Mayo Clinic' and there they are!
Try adding your comments. We certainly enjoy reading them, and they are available to all the readers who come here. Blogging is an interesting world, and much easier than it looks at first blush.
Also, for those who just want to e-mail Martha Sue, simply click on the "Sue's e-mail Address" on the right side of the Blog, and you can.
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
Turns out if you right click on any photo, you can print it or do a number of other things with it. For those of you who want some of the photos you see, help yourselves.
Dr. Dooley, my neurologist, called today. He had assessed the report from Dr. Smith at the Mayo Clinic and, while there is no definitive diagnosis, Dr. Smith is leaning toward ALS and recommends a follow-up evaluation in six to nine months. This is NOT what I wanted to hear, but there is hope in that ALS is a catch-all diagnosis and I don't exhibit some of the classical symptoms one would expect. KEEP PRAYING FOR ME! Something has been helping. I definitely am stronger and can do things I could not do in February. However, I have lost more use of my hands, and that is a worrisome development. My Physical Therapist has noted improvement in some areas and tells me to keep doing whatever it is that I am doing.
Right after my conversation with Dr. Dooley, I saw my primary care physician for my plugged-up ear. He was wonderful, but then totally forgot I was waiting in an examining room and left! He was encouraging, i.e., he was encouraging before he forgot me. Oh, these physicians, must be a tough way to make a living these days.
I'm vacillating between a state of despair and one of hopefulness. Whatever it is, this is one miserable disease. I keep doing my daily workouts and ALL the exercises my physical therapists recommend. We keep the 'Slim and Bulges' workout room quite busy. The equipment has not turned out to be an extra closet, which has been the case most of our lives not just for us but for a lot of folk we know.
Anyway, I will see Dr. Dooley next week for a more thorough consult and will post an update after that.
We are back to normal--whatever that is. Shirley leaves tomorrow for Chicago. Den will arrive for a week on Friday. Rose will leave for Chicago on Saturday. Tomorrow I see my healing practitioner for massage, and Thursday my friend Mary is coming for lunch.
The Cardinals, once again, have 'whupped' the Cubs. With two Cubs fans in this house, it is a little difficult to root for the old home team, but I do it anyway and enjoy it. And besides that, the Cubs never win anything anyway, so what's the big deal?
Right now, Shirley is in the kitchen cooking up some comfort food--one of our favorite cookies and some she likes too. Tomorrow, it is back to the workout room!
Turns out if you right click on any photo, you can print it or do a number of other things with it. For those of you who want some of the photos you see, help yourselves.
Dr. Dooley, my neurologist, called today. He had assessed the report from Dr. Smith at the Mayo Clinic and, while there is no definitive diagnosis, Dr. Smith is leaning toward ALS and recommends a follow-up evaluation in six to nine months. This is NOT what I wanted to hear, but there is hope in that ALS is a catch-all diagnosis and I don't exhibit some of the classical symptoms one would expect. KEEP PRAYING FOR ME! Something has been helping. I definitely am stronger and can do things I could not do in February. However, I have lost more use of my hands, and that is a worrisome development. My Physical Therapist has noted improvement in some areas and tells me to keep doing whatever it is that I am doing.
Right after my conversation with Dr. Dooley, I saw my primary care physician for my plugged-up ear. He was wonderful, but then totally forgot I was waiting in an examining room and left! He was encouraging, i.e., he was encouraging before he forgot me. Oh, these physicians, must be a tough way to make a living these days.
I'm vacillating between a state of despair and one of hopefulness. Whatever it is, this is one miserable disease. I keep doing my daily workouts and ALL the exercises my physical therapists recommend. We keep the 'Slim and Bulges' workout room quite busy. The equipment has not turned out to be an extra closet, which has been the case most of our lives not just for us but for a lot of folk we know.
Anyway, I will see Dr. Dooley next week for a more thorough consult and will post an update after that.
We are back to normal--whatever that is. Shirley leaves tomorrow for Chicago. Den will arrive for a week on Friday. Rose will leave for Chicago on Saturday. Tomorrow I see my healing practitioner for massage, and Thursday my friend Mary is coming for lunch.
The Cardinals, once again, have 'whupped' the Cubs. With two Cubs fans in this house, it is a little difficult to root for the old home team, but I do it anyway and enjoy it. And besides that, the Cubs never win anything anyway, so what's the big deal?
Right now, Shirley is in the kitchen cooking up some comfort food--one of our favorite cookies and some she likes too. Tomorrow, it is back to the workout room!
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
We took the baby home on Sunday. Leaving him with Dad and Jalen wasn't so tough this time because we will have both children again in two weeks. Jalen was a delight and full of news about his travels. He had been both to Washington, D.C., and the state of Washington in the past three weeks. We asked if he went to the White House. He said, in great amazement, "NO! They would have killed me!" Our guess is that security concerns made a big impression on him.
On Monday Dr. Dooley got the formal written report from Dr. Smith of the Mayo Clinic. I expect to hear from Dooley today after he assesses the test results.
Today I go back to my primary care physician for more unplugging of my ears. Ugh! It surely is uncomfortable.
Rose and I had a card from Jack and Lisa who were in Granada, Lisa's favorite city in Spain. They were having a great time, especially enjoying the food.
Bush will be in St. Charles today. According to the news this morning, tickets are already all gone. Traffic will be a bear, so we will stay far, far away from his motorcade route.
This weblog host now has the capability for adding photos to our blog. We'll be adding them from time to time. If you have a photo you want posted, e-mail it to us and we'll give it a go.
As always, we welcome your comments. Just click the 'comment' icon and follow the instructions.
We took the baby home on Sunday. Leaving him with Dad and Jalen wasn't so tough this time because we will have both children again in two weeks. Jalen was a delight and full of news about his travels. He had been both to Washington, D.C., and the state of Washington in the past three weeks. We asked if he went to the White House. He said, in great amazement, "NO! They would have killed me!" Our guess is that security concerns made a big impression on him.
On Monday Dr. Dooley got the formal written report from Dr. Smith of the Mayo Clinic. I expect to hear from Dooley today after he assesses the test results.
Today I go back to my primary care physician for more unplugging of my ears. Ugh! It surely is uncomfortable.
Rose and I had a card from Jack and Lisa who were in Granada, Lisa's favorite city in Spain. They were having a great time, especially enjoying the food.
Bush will be in St. Charles today. According to the news this morning, tickets are already all gone. Traffic will be a bear, so we will stay far, far away from his motorcade route.
This weblog host now has the capability for adding photos to our blog. We'll be adding them from time to time. If you have a photo you want posted, e-mail it to us and we'll give it a go.
As always, we welcome your comments. Just click the 'comment' icon and follow the instructions.
Monday, July 19, 2004
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