Today, for the first time ever, I actually had a face to face appointment with Dr. Deftos. I saw him at the UCSD 'Perlman' Medical Center in La Jolla (so $9 round trip).
I've actually been 'consulting' with Dr. Deftos THROUGH some of my other Endos, that have 'consulted' with him for the last several years. Now I'm STILL having hyperparathyroidsim, even though all med changes etc that he's suggested, have been given a good try. So I am now eliminating the 'middle-man-doc' and going straight to the source.
Especially as I am slowly getting sicker and sicker.
I made sure I took in copies of all the records I could get my hand on, and there were a lot, especially labs! I was even able to take the the surgical report from 1982.
We had also been in touch via email to even make this appointment. Since he is in research, and is a 'formost' parathyroid specialist in America, you don't just call up and request an appointment. It took me two weeks just to track down his email address from my other docs.
So, I was anticipating and prepared for this appointment. I was also prepared to be 'brushed off' (he IS a researcher), or for him to refuse to take me on as a patient.
Neither was the case. He listened to me. He briefely reviewed my records. He asked me some pertinent questions. Then he lined out what he would do and how he would do it.
First of all he wanted all current Calcium, pth, tests repeated at his lab. (The blood was drawn today). Then, it they come back too high, he will have the SAME tests done at two OTHER Labs, one at a time, depending on if the results continue to come back too high.
He then spoke of, POSSIBLY, down the line, a full body CT, a second Sestamibi Scan of entire head/chest. (I kept blacking out during the first one I had 4 yrs ago-so not looking forward to that!). Then we'd go from there.
So, he accepted me as one of his patients!
I left there, having had the first set of the 3 bloodworks drawn, feeling like there might be some help after all, but it isn't going to be either fast nor easy!
Wednesday, September 27, 2006
Saturday, September 23, 2006
The Coves BBQ 2006
Compared to last year, there were hardly any people there! I was amazed. Usually it’s a packed event. But I think last year, it was scheduled before September.
September brings a lot of little stuff folks need to do, especially if they have kidlets in school. I also think there was a Padres game this afternoon, and I know the annual ‘light show’ event is scheduled for tonight at Qualcomm Stadium.
There were very few people there I knew, and they came, ate, left!
As always the food (catered) was great. But I didn’t eat too much, as my post meal blood sugar proved.
And there was a DJ, and a good mix of music that was so loud you couldn’t talk to anyone.
Something new this year – a drawing for 3 $50 gift certificates. Of course, I didn’t win one!
I just wish it were more often than once a year. I’m not quite sure what this ‘event’ is for; if it’s for residents to ‘meet’ each other, once a year doesn’t get it. I’d rather have hot dogs once a month!
September brings a lot of little stuff folks need to do, especially if they have kidlets in school. I also think there was a Padres game this afternoon, and I know the annual ‘light show’ event is scheduled for tonight at Qualcomm Stadium.
There were very few people there I knew, and they came, ate, left!
As always the food (catered) was great. But I didn’t eat too much, as my post meal blood sugar proved.
And there was a DJ, and a good mix of music that was so loud you couldn’t talk to anyone.
Something new this year – a drawing for 3 $50 gift certificates. Of course, I didn’t win one!
I just wish it were more often than once a year. I’m not quite sure what this ‘event’ is for; if it’s for residents to ‘meet’ each other, once a year doesn’t get it. I’d rather have hot dogs once a month!
Thursday, September 21, 2006
HUD Inspection 2006
My apartment failed Inspection today; because some of the plaster/paint is chipped (actually, a LOT, all over the apartment, though no worse than last year!).
I tried to explain to the woman that I’d lived here 8 years, and it needed painting. (Which the inspector last year definitely commented on – and I had to hire someone to wash the bathroom walls and the owner came in and painted it.). Her reply to this was that the management wouldn’t paint my apartment because “You smoke in here”.
Has everyone in the whole friggen world gone nuts???
But she would have NONE OF IT. She said not only would the repairs have to be made, but I would need to get ‘plastic’ corners to protect the walls from my wheelchair and walker! That they were available at Home Depot for a couple of bucks each.
People who have cars, and are not ill, just don’t ‘get it’. Right, I’ll just run right down to Home Depot, whip out my checkbook, come back home and pay someone to install them!!!
This of course means, I have to go through this all over again next month. Sigh. After the management repairs and paints the dings all over my apartment. I can only hope they regard this as ‘normal wear and tear’ after 8 years of use, and not change me for it!
But, I’ve been thinking, I WILL NOT put plastic corners up on the walls! This is NOT a ‘nursing facility’ it’s my ‘home’. ; Maybe this Inspector woman who arrived today with her nose in the air, and a regular paycheck, encases her couch in plastic and puts vinyl runners on her carpet, but I don’t live that way. And won’t
Think I'll pour myself a can or two of Orange Soda, over lots of ice, and go to bed with my cats. I'll watch some television, let my leg ooze blood, emotionally gird myself for the wheelchair repairs tomorrow...and turn OFF the world for awhile!
I tried to explain to the woman that I’d lived here 8 years, and it needed painting. (Which the inspector last year definitely commented on – and I had to hire someone to wash the bathroom walls and the owner came in and painted it.). Her reply to this was that the management wouldn’t paint my apartment because “You smoke in here”.
Has everyone in the whole friggen world gone nuts???
But she would have NONE OF IT. She said not only would the repairs have to be made, but I would need to get ‘plastic’ corners to protect the walls from my wheelchair and walker! That they were available at Home Depot for a couple of bucks each.
People who have cars, and are not ill, just don’t ‘get it’. Right, I’ll just run right down to Home Depot, whip out my checkbook, come back home and pay someone to install them!!!
This of course means, I have to go through this all over again next month. Sigh. After the management repairs and paints the dings all over my apartment. I can only hope they regard this as ‘normal wear and tear’ after 8 years of use, and not change me for it!
But, I’ve been thinking, I WILL NOT put plastic corners up on the walls! This is NOT a ‘nursing facility’ it’s my ‘home’. ; Maybe this Inspector woman who arrived today with her nose in the air, and a regular paycheck, encases her couch in plastic and puts vinyl runners on her carpet, but I don’t live that way. And won’t
Think I'll pour myself a can or two of Orange Soda, over lots of ice, and go to bed with my cats. I'll watch some television, let my leg ooze blood, emotionally gird myself for the wheelchair repairs tomorrow...and turn OFF the world for awhile!
Another Medical Hassle
And it’s my own fault.
Today I went to a dermatologist to have a mole that had suddenly started getting big, removed from my thigh. He said he was ‘cauterizing’ it, so I didn’t mention I was a ‘bleeder’ because of the HH. Now this was no big thing, the mole was maybe only half the size of a dime and from what I can see, he only took out a little scoop of my dermis, though considerably deeper than a cat scratch, that’s for sure.
When he was done, he put a BAND AID on it, gave me a standard ‘care’ instruction sheet (which by the way, didn’t mention BLEEDING). And I went merrily on my way.
By the time MTS Access (disabled transit - $4.50 each way) picked me up and delivered me to my curb, I was starting to feel a little pain in that thigh, and maybe a little wet. (Dumb me!).
When I got in the apartment, and went to the bathroom, I discovered I’d bled through my slacks, through the wheelchair pad, onto the seat itself. I was ticked! Slacks are hard to come by – hope I can get the stain out!
Well, I padded the ‘Band Aid’ with a wad of paper towels, as the cats needed dinner and I needed to to a blood glucose and pump some insulin, and other household things. I bled through those in about 2 hours.
Next, at the suggestion of a friend who had incidentally called, I put intermittent pressure on it with an ice pack. That helped. Still, the danged thing ‘oozed’ all night, and I kept waking up to check on the bleeding. Now I knew, logically, that I’d not bleed to death from this little scooped out area of skin, but it made me a nervous wreck, even though I took an extra xanax.
The thing that ‘gets to me’ about this kind of situation is: what do I do now??? If I called this doc, he’d just tell me to come to the office. I don’t have a car. I can’t get disabled transit back to the doc unless I schedule two days ahead of time and spend ANOTHER $9. My wheelchair is not safe enough right now, to take the public bus, even to the local Urgent Care.
And I had the annual HUD inspection looming later today. Then I am scheduled to FINALLY get my wheelchair repaired (ordered part arrived – after two months) on Friday; I have to go spend five hours out there. So just when and how would I get medical attention?
The answer is, I don’t! It will just have to ‘ooze’ and I’ll change the dressing every 4 – 6 hours, putting a thick coating of an antibiotic ointment that I happened to have on hand, on the dressing in the hopes of preventing infection and plugging up that little hole in my fat old leg.
If it’s still doing its thing on Saturday, my wheelchair will have been fixed, and I can take the bus to Urgent Care.
By the way, I will NOT be going back to THAT Dermatologist; he not only doesn’t know how to cauterize, but paid no attention to my diabetic tendency to infections.
This brings me around to ‘it is my own fault’, as I haven’t been able to get to the Hematologist for the required blood work/treatment. In fact, I am way past due. My hemoglobin & hematocrit could be sky high as far as I know (it is definitely UP, or I wouldn’t bleed like this.)
And can ANYONE out there explain this HH tendency to bleed (has NOTHING to do with Pro-Times, etc) to me?
Today I went to a dermatologist to have a mole that had suddenly started getting big, removed from my thigh. He said he was ‘cauterizing’ it, so I didn’t mention I was a ‘bleeder’ because of the HH. Now this was no big thing, the mole was maybe only half the size of a dime and from what I can see, he only took out a little scoop of my dermis, though considerably deeper than a cat scratch, that’s for sure.
When he was done, he put a BAND AID on it, gave me a standard ‘care’ instruction sheet (which by the way, didn’t mention BLEEDING). And I went merrily on my way.
By the time MTS Access (disabled transit - $4.50 each way) picked me up and delivered me to my curb, I was starting to feel a little pain in that thigh, and maybe a little wet. (Dumb me!).
When I got in the apartment, and went to the bathroom, I discovered I’d bled through my slacks, through the wheelchair pad, onto the seat itself. I was ticked! Slacks are hard to come by – hope I can get the stain out!
Well, I padded the ‘Band Aid’ with a wad of paper towels, as the cats needed dinner and I needed to to a blood glucose and pump some insulin, and other household things. I bled through those in about 2 hours.
Next, at the suggestion of a friend who had incidentally called, I put intermittent pressure on it with an ice pack. That helped. Still, the danged thing ‘oozed’ all night, and I kept waking up to check on the bleeding. Now I knew, logically, that I’d not bleed to death from this little scooped out area of skin, but it made me a nervous wreck, even though I took an extra xanax.
The thing that ‘gets to me’ about this kind of situation is: what do I do now??? If I called this doc, he’d just tell me to come to the office. I don’t have a car. I can’t get disabled transit back to the doc unless I schedule two days ahead of time and spend ANOTHER $9. My wheelchair is not safe enough right now, to take the public bus, even to the local Urgent Care.
And I had the annual HUD inspection looming later today. Then I am scheduled to FINALLY get my wheelchair repaired (ordered part arrived – after two months) on Friday; I have to go spend five hours out there. So just when and how would I get medical attention?
The answer is, I don’t! It will just have to ‘ooze’ and I’ll change the dressing every 4 – 6 hours, putting a thick coating of an antibiotic ointment that I happened to have on hand, on the dressing in the hopes of preventing infection and plugging up that little hole in my fat old leg.
If it’s still doing its thing on Saturday, my wheelchair will have been fixed, and I can take the bus to Urgent Care.
By the way, I will NOT be going back to THAT Dermatologist; he not only doesn’t know how to cauterize, but paid no attention to my diabetic tendency to infections.
This brings me around to ‘it is my own fault’, as I haven’t been able to get to the Hematologist for the required blood work/treatment. In fact, I am way past due. My hemoglobin & hematocrit could be sky high as far as I know (it is definitely UP, or I wouldn’t bleed like this.)
And can ANYONE out there explain this HH tendency to bleed (has NOTHING to do with Pro-Times, etc) to me?
Thursday, September 14, 2006
Rug Cleaning Day
It happens every year during late August or September. My carpet gets cleaned, gratis the owners, in celebration of the yearly, soon to come HUD inspection.
This year it was particularly difficult, though I’m probably in the best shape (medically), that I’ve been in for awhile, as I have no current ‘housekeeper’.
For some reason, probably because I’m mainly in a wheelchair, stuff in this place tends to gravitate to floor level. It’s amazing how much stuff has to be hauled up on top of other stuff so that the carpet can be cleaned; the cat scratch box, the box of cat toys, my change jar, doorstops, my chair recharger, and on and on...
I tried to do the preparations myself, but soon got overtired, overworked, and overwhelmed. So I paid a neighbor cash to help me out.
So a white van pulled up in front of the building, and a nice guy with a slight French accent, (turns out he moved here from France more than a decade ago) started dragging out hoses. This guy, Allen, I’d not met before; too bad, because he did an excellent job, pre-treating, and taking the time to do as much of the carpet as he could in a meticulous fashion.
Thus, here I am, the day AFTER the carpet cleaning, sitting here looking at this nice clean carpet and all this stuff piled on couch, tables, dresser etc., that needs to be again placed where it usually lives. It’s gonna be a long time, I think, as I have no more ‘cash’ to hire someone to help me.
Makes me tired just looking at it all.
This year it was particularly difficult, though I’m probably in the best shape (medically), that I’ve been in for awhile, as I have no current ‘housekeeper’.
For some reason, probably because I’m mainly in a wheelchair, stuff in this place tends to gravitate to floor level. It’s amazing how much stuff has to be hauled up on top of other stuff so that the carpet can be cleaned; the cat scratch box, the box of cat toys, my change jar, doorstops, my chair recharger, and on and on...
I tried to do the preparations myself, but soon got overtired, overworked, and overwhelmed. So I paid a neighbor cash to help me out.
So a white van pulled up in front of the building, and a nice guy with a slight French accent, (turns out he moved here from France more than a decade ago) started dragging out hoses. This guy, Allen, I’d not met before; too bad, because he did an excellent job, pre-treating, and taking the time to do as much of the carpet as he could in a meticulous fashion.
Thus, here I am, the day AFTER the carpet cleaning, sitting here looking at this nice clean carpet and all this stuff piled on couch, tables, dresser etc., that needs to be again placed where it usually lives. It’s gonna be a long time, I think, as I have no more ‘cash’ to hire someone to help me.
Makes me tired just looking at it all.
Saturday, September 02, 2006
My Avon Comb
I reached for it and somehow, perhaps because I was not paying attention, it slipped out of my grasp. I watched as it fell the 4 or so feet from the shelf to the floor.
Imagine my surprise when I bent over and picked it up to find that it had broken! The last fourth of the handle just kind of flopped around as I held it. The broken section was still attached to the rest of the comb, but barely.
I held it together with the palm of my hand as I combed my hair and wondered if gluing it back together would work. I loved that comb. My heart was broke.
It was not until the next day that I remembered the claims that Avon had made when I purchased the comb and brush (which had disappeared mysteriously, never to be seen again.) That is right, unbreakable!
I found myself wondering if Avon would replace my comb, as it had broken, proving their claims wrong. But then, I had not the slightest idea where the receipt was. I am not good at keeping those kinds of things. I wondered if they would honor their claim without a receipt. I doubted it.
This morning, I grabbed another, not as good, not as comfortable in my hand, not a blue, comb. It worked as well as my Avon comb but was definitely an unsatisfactory experience. One I knew I would have to get used to if I could. Still, it is difficult to break with an item you have been using for 23 years...
Imagine my surprise when I bent over and picked it up to find that it had broken! The last fourth of the handle just kind of flopped around as I held it. The broken section was still attached to the rest of the comb, but barely.
I held it together with the palm of my hand as I combed my hair and wondered if gluing it back together would work. I loved that comb. My heart was broke.
It was not until the next day that I remembered the claims that Avon had made when I purchased the comb and brush (which had disappeared mysteriously, never to be seen again.) That is right, unbreakable!
I found myself wondering if Avon would replace my comb, as it had broken, proving their claims wrong. But then, I had not the slightest idea where the receipt was. I am not good at keeping those kinds of things. I wondered if they would honor their claim without a receipt. I doubted it.
This morning, I grabbed another, not as good, not as comfortable in my hand, not a blue, comb. It worked as well as my Avon comb but was definitely an unsatisfactory experience. One I knew I would have to get used to if I could. Still, it is difficult to break with an item you have been using for 23 years...
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