POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: rondrond on December 07, 2013, 04:54:52 am
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..is it that I have no energy or motivation to do anything?
My last labs had Dr D crowing and then wondering why I wasn't. I looked her square in the eye and said that I was glad that all the pills I swallow have finally accomplished the numbers they wanted...
Cholesterol, triglycerides, Vl, T cells, blood pressure, the whole enchilada, has everything in range and under control....yet...
I feel like crap. I felt better when my numbers were askew.
I haven't lost weight, but I have lost two pant sizes. I can lift my arms up and stretch, and my pants hit the floor.
I've lost my buddah belly and my neck is shrinking.
I still have all but one of my teeth. It was touch and go on the front teeth as in July the dentist was doing my cleaning and when through, turned to me and said, out of the clear blue, that she was scheduling me for an extraction.
"What?!?"
"You have a cavity under the gum which is almost impossible to service so will have to pull the left front tooth and make a bridge, which involves grinding down two perfectly good teeth to hold it in place."
"So, I have been here every six months getting my teeth cleaned, you have never said a word about this before and now all of a sudden my front teeth are goners?...I don't think so."
"Well we do have a Dr T who only comes is on Tuesdays who might do under the gum procedures, but he has a really bad bedside manner."
"Schedule me"
One week later in August, I'm sitting in the chair with the assistant reminding me that he was eccentric and rude...etc
In walks this small man who looks like Yoda, without the ears, and he opens my mouth and goes..."aarrggh"
The asst asks whats wrong and he goes off on her because my last visit they had pulled a crowned tooth that they stated had a cavity under it.
"You pulled his tooth, I could have saved it, all y'all do around here is pull pull pull for no reason. I save teeth."
By this time I was in the frame of mind that I liked this man.
Then he looked at me and stated that he was going to save my teeth and that he was going to do it in about an hour. He explained what he was going to do before he did it and while he was working he explained what he was doing and why he was doing it....and the asst was all gaga...
When finished, he just got up, looked at the asst, said, see I have saved his teeth that you were going to pull, and left.
I was in love.
The asst was all flustered, stating that he must have really liked me or something as he had NEVER done this before.
I do a lot of smiling nowadays as I remember every day that those teeth could have been gone.
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Oh Ron speaking as some one whose mouth resembles a forgotton grave yard I too am in love with your dentist.
AS to the start off your Post a hint off the depressions ? I can remember how consumming caring for your sister was for you and her leaving the household must be a huge change with pros and cons.
Now see if that lovely Yoda likes London.
m
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Ron, has your doctor ever discussed CFS with you?
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I like that story Ron . I seem to attract and keep eccentrics in my circle maybe because I'm abbynormal like the brain in young Frankenstein .
I had a ID doc once who could be handful but he was such a good doctor . I left him for a nicer doc once but soon came crawling back ( his words ) . Doctors don't usually talk ill of other doctors but some used to say my doc had no soul because he treated the infectious disease with more respect than the patient . In the end he became almost fond of me I think because he smiled once .
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... . In the end he became almost fond of me I think because he smiled once .
I'm not surprised...you tend to make people smile.
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Ron, has your doctor ever discussed CFS with you?
Yes, in a noncomittal, 'we're not officially having this discussion' kind of way. Dr C is convinced that my COPD is the culprit for my tiredness, especially after a warm shower. After @ 10 minutes in the shower, I become obsessed with the urgent desire to sit down and catch my breath.
After a sit/lie down of about 15 minutes, I'm ready to go again. It's weird.
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... I can remember how consumming caring for your sister was for you and her leaving the household must be a huge change with pros and cons....
m
When Katie first went to the Nursing Hone I would visit on the weekends, while mom visited everday. She was supposed to be there for rehabilitation as a month in the hospital had left her weakened and unable to transfer to her chair, and to the toilet.
We chose this Center as the advertised all kinds of rehabilitative services. She was supposed to only be there for a short period of time.
She kept getting UTI's and the cellultis kept coming back on her legs which kept delaying her 'therapy'
She started gaining an alarming amount of weight and at her Care Meetings, I would express my alarm at her weight gain and her diet. She had reached 500lbs.
It appeared that they were giving her seconds and even thirds and I ranted, "can't you see that she is grossly overweight? Why would you give her all that food?"
"Well, by law, if she requests more food, we can't refuse her."
This is when Mom and I started being there for meals so I could give her the evil eye when the aide would come in and ask if she wanted anything else.
They had to use a hoyer lift to get her in her chair to take her for her shower..... http://www.phc-online.com/v/vspfiles/html/hoyer_patient_lifts.htm
It has a sling that squashes her legs together and causes bruising on her legs and thighs. It hurt her so bad she stopped taking showers and settled for what I call 'bird baths' (bed baths) until her brusing would heal, then they would put her in the hoyer lift and the bruising would come again.
It got to where the aides and staff would run when mom and I entered the building. The plastic edges of the bed pan were cutting her buttocks, so mom bought a stainlees steel bed pan.
We kept finding it in the bath tub or in the bottom drawer of her dresser with 'chocolate coatings on it'
..at another Care Meeting..."Oh we have new staff and we will have to retrain them on cleaning the bed pan"
At every Care Meeting..."what is her goal?"
"Her goal is to transfer to her chair to the toilet so she can come home."
She is now at 380lbs. She was at 370 when Daniel started visiting her in the afternoons. He has a new girlfriend who is a manager at an Italian restaurant and was bringing her food,. He would go to the snack machine and buy her flaming hot cheetos, root beer, and hot tamales which...
...she would devour and he would leave before mom and I got there. This went on until weighing in day showed that she had gained 10lbs. Then another 10lbs.
One day I was helping her sit up and on her chucks right at th bottom of her diaper was a....
..hot tamale. I picked it up and examined it exclaiming that either there was something horribly wrong with here poop, or it was a hot tamale.
She confessed. I blasted Daniel and he agreed to not bring her food.
Nov 22 the Nursing Center had family Thanksgiving and Mom and I were there and surprisingly Daniel and he was bringing his new girlfriend, Lisa, who we had not met.
Daniel and Lisa were there first and upon entering her room, I saw a bottle of root beer. Daniel was feeling festive and grabbed her 'teeth container' which was full of change asking if she wanted anything else from the snack machine.
My back burner lit, but I didn't say anything because of the occasion and Lisa. Then I helped Katie sit up and once again there was something odd in the bed with her and this time it was a flaming cheeto.
I went up in flames and blasted Daniel again.
Then last week they removed all the railings from the beds and Katie can't roll from side to side to have her diaper changed without grabbing the railings.
So she used her trapeze bar and twisted her shoulder which now has a torn ligament and she can't do anything with her right arm.
They also didn't want her sitting on the side of the bed without a staff member present.
"Well, it's dinner time and she needs to sit up."
"We don't have anyone available to do that"
"Don't you think you should hire more staff?"
"Oh we're fully staffed"
"Then Katie needs someone to come sit her up and sit there while she eats"
"Well, we don't have anyone available to do that right now."
over and over and over......
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Oh Ron I am so sorry, what idiots , I cannot imagine 500lbs , poor Katy. If she is so motivated by food , then how about the food that is good for you and does not pile on the Lbs or is that not the same for Katy? Is it junk food she only craves ? Personally I think I would consider legal action over the weight gain as it is such an attack on her health, I truly do not understand how the institution gets away with it.
Are you keeping a diary of your visits?
Michael
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Oh Ron I am so sorry, what idiots , I cannot imagine 500lbs , poor Katy. If she is so motivated by food , then how about the food that is good for you and does not pile on the Lbs or is that not the same for Katy? Is it junk food she only craves ? Personally I think I would consider legal action over the weight gain as it is such an attack on her health, I truly do not understand how the institution gets away with it.
Are you keeping a diary of your visits?
Michael
I wouldn't consider legal action as Katie has always had a problem with her weight. She has hyperlipedemia. She has been able to control it by being active, and lying in a hospital bed for three years is not being active.
At first, her Care Meetings involved everyone sitting and getting their share of whatever finger foods and drink were there and gossip. Then they would state all Katie's problems and goals, then ask how we were going to address these problems to reach her main goal of transferring to her chair so she can come home.
Any therapy was always hinged on her weight and the incapacity of many machines to handle anything over 300lbs....thus they couldn't do anything until she lost weight and that Medicaid was limited in funds for therapy issues..
After the fourth Care meeting when Katie had reached 500lbs I finally had had enough and 'stood and delivered' that I had worked for the State of Texas MHMR as a Program Manager for ten years and did not understand what had changed in the process...
..but it was not being followed here as I remembered it. 3 members got up and excused themselves for some important reason or another, and they requested mom turn off her recorder, after making her and me sign some paper that she was taping the meeting.
I got Katie on Medicare and therapy did show up, but it was sporadic and then to all intents and purposes stopped, though the Medicare summaries showed all types of visits, which we questioned were being done as we never saw anyone in her room.
When they finally accepted that we were not just going to be there on an occasional weekend or Holiday, a therapist started showing up to give electric stimulation to her shoulder, which has helped a lot as she can now use that arm again.
Now for her legs and butt muscles....
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This may sound like a stupid question but is Katie happy where she is ? I'm only asking because I had a family member who had to go into assisted living for a short while but it soon became evident that she was sabotaging her own progress in order to stay there .
I'm not saying your sister is doing that but it does sound like she is determined to have what she wants to eat no matter the consequences .
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This may sound like a stupid question but is Katie happy where she is ? I'm only asking because I had a family member who had to go into assisted living for a short while but it soon became evident that she was sabotaging her own progress in order to stay there .
I'm not saying your sister is doing that but it does sound like she is determined to have what she wants to eat no matter the consequences .
I have brought up to her that she might becoming institutionalized...especially when it started becoming obvious that she was not using the bed pan and just doing it in the diaper. And this was after she would start making noises that she was feeling the urge to go and I'm like..
"did you push the call light?"
mom-"do you want me to put you on the bed pan?"
and we would get a 'no' on both questions.
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I guess the path of least resistance is attractive to her or people in her position . I know from what you have said life has been hard for her . She may feel like she isn't a burden to family there and all of her needs are being met without having to deal with the extra emotional toll being incapacitated has put on her .
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I guess the path of least resistance is attractive to her or people in her position . I know from what you have said life has been hard for her . She may feel like she isn't a burden to family there and all of her needs are being met without having to deal with the extra emotional toll being incapacitated has put on her .
I agree, and I keep reminding mom that bottomline is the only person who can get Katie home...is Katie. She knows what has to be done and how to do it. We can't do it for her. When she is good and ready to come home, she will.
"You can lead a horse to water...but, you can't make him drink"
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Ron
so sorry to hear Katie is still not doing well. what a shame.
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Ron
so sorry to hear Katie is still not doing well. what a shame.
Thank you Joel, but as of today she is doing much better. She told the therapist that her brother was looking for a facility that could meet her needs and...
suddenly, the promised services began.
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I had a Coumadin Clinic appt today. I knew it was going to be off as my calves have been aching, hip and lower back were hurting more than usual and my ears have been ringing.
My INR was at 4.6. I have to go back on Friday.
I am not happy. The other day I got off the toilet and before I flushed, my eye caught something big and white in the poop.
Closer examination proved to be a pill, looked like the potassium or gemfribozal. They both interact with coumadin and could be the cause of an elevated INR.
This morning there was another white pill in my poop, but I didn't see it until after I had already flushed.
I have been tasked with gathering a specimen to determine which pill it is. If it is time released, sometimes the shell will not dissolve but the medication has.
I am hoping for this as the answer...especially since my labs have been perfect.
The alternative is that there is something wrong with my digestive tract...
"Is this going to be some 60 year old man thing?" "Cause if it is, I don't want to participate."
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Ron
There is no such thing as a "60 Year Old Thing". If you have a problem discuss it with the doc.
I hate to say this but, I will be 70 years old this year. And the older I get the more I hate to hear "OLD" jokes... you know the kind, they come in email.
What you are discribing is something that comes under the catagory of "gross poop stories", we all have them. Looking at your poop is not a bad thing, as it can tell you a lot about your diet. Or whatever.
Tell us more.
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Its not uncommon to find the pill casing or what looks like a whole ill with some meds .
Metformin Pills for diabetes comes to mind, it looks a pristine as the day it went in for the most part but it has done its job effectively none the less .