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Author Topic: The Saga continues...  (Read 1984 times)

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Offline rondrond

  • Member
  • Posts: 1,712
The Saga continues...
« on: January 31, 2014, 08:38:11 AM »
of an Old Poz Queen...

I tell you...if I could just get some energy I could take advantage of the boom in the Health field....

My kidneys are fine. The pill coming through was Potassium. No more Nexium for me as I was told that it was lowering the acidity in my stomach to a level that it couldn't digest properly.... ???

DrC wants me to have a venous doppler to check on the blood flow in my legs. I still have hesitated on calling to set the appointment as I remember my paternal gmom had really bad varicose veins.

As a child I remembered she was always wrapping them in ace bandages and eventually had surgery to have the veins stripped.

I was just a child and living in my own world, but I seem to recall that the surgery did not seem to work very well....

I'm still in' thinking about it mode'....as I sit here in my stylish compression stockings...black...made for the business man....

...they were fine until the temp (don't hate me up north) reached 60 today and I am sweating...they are hot. (one of the reasons for non compliance)

Back during Thanksgiving, I noticed that Katie's hand and arm were swollen and I distinctly remember telling her that I thought she had a blood clot....

I told the head nurse who had her INR checked and stated that she was fine as she was in therapeutic range.

For months she has complained about the pain in her shoulder and arm and still nothing was done but to rub Icy Hot on it.....

Wednesday, I was on my way to the nursing home and my cell phone went off like crazy....

1) it was mom...an ambulance was picking Katie up and taking her to the hospital.

2) It was the nursing home advising me that Katie had started screaming in pain and they had a doppler done and discovered two blood clots...one in her jugular and one under her armpit.

I got there 5 minutes before the ambulance. I cannot even remember all the thoughts that were racing through my mind except to tell you that the first and foremost was..


not again....not another person under my watch.....

The head nurse was watching for me and tried to do his game of damage control, as he always does...standard pat answer...."they never told him"  "she never told him"

It's always someone else, not him....

I'm grabbing a bag and stuffing it with her personals, her glasses, toothbrush, hairbrush...

Got her laptop...I'm going in circles....

..the EMT telling head nurse they needed help getting the gurney into the ambulance...Katie is a large woman....

head nurse....oh I can't do that...I have a bad back and I'm not going to hurt myself for no one...

me:" oh get out my way you useless man....I'll do it"

5 o'clock traffic following an ambulance ...true to Texas, it's 60 today, that night it was 33 and windy....

..at the hospital, following, not able to do anything....Katie is just staring at the ceiling with glassy eyes....

nobody know anything because the nursing home hasn't sent her records and they have to depend on what I tell them....(and I wasn't even sure I had it right)

please,pleaseplease...

they start the Lovenox injections and Katie reacts, her eyes move, and she can talk groggy, but making sense....

I'm on the phone with mom who is very sick with a fever and sore throat for a week....

..I don't know....I can't snap at mom....she wants to know whats happening and all I want to do is hang up...

I'm losing it...I can't find her medicare card...it's in this bag...somewhere....

I can't stop sweating..it's running down my face, dripping off my hair down my neck.....

why can't I stop sweating? It's maddening....

take off my coat.....take off my sweater.....

...lookinglooking..where the hell is that card?

I find it....Katie is talking....she can't move her head....so I have to lean over so she can see me....

..you're going to be ok...you have to be ok..

Alex wants to put in an IV....she has only one good vein and it's in the arm with the clot....

he tries the other arm...Katie keeps trying to stop him....pointing to the other arm....he doesn't listen....

I'm telling him she bruises easily....he tries twice and goes to the other arm...

the bruises are already appearing from the failed attempts....

Katie is fussing about them.....it's ok, don't fight him girl, you have to deal ..I have to deal....

Following again.....to the 6th floor....she has stabilized....she has a room and is now talking and sitting up....she is aware of her surroundings....

thank you god, buddha, fairies....anything I thought could help....I used it.....

my back is one big aching pain....

Katie is going to make it.....she is asleep and it's almost 10pm....I go home....

taking off my sweaty clothes it hits me...

..I was sweating from wearing those damn compression stocking....






"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,409
  • How am I doing Beren ?
Re: The Saga continues...
« Reply #1 on: January 31, 2014, 08:46:01 AM »
I am so relieved that Katie is going to be OK . Thank god she has you to look out for her best interest .

Its been awhile since you have been around and I hope you are doing well . 

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,915
Re: The Saga continues...
« Reply #2 on: February 01, 2014, 12:19:35 PM »
Wow, what an ordeal.  Is there anything there like Real Services (sometimes referred to as Council on Aging)?  I was wondering because many times, at least here, you can get a disabled person in a nursing home set up with an advocate.  It may take a little of the pressure off of you sometimes.

I really hope your medical situation stabilizes somehow.  Please take care of yourself!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: The Saga continues...
« Reply #3 on: February 01, 2014, 03:39:24 PM »
Ron,

I do not understand Katie,s home it must be stress to the max as there is now a history for Katie and your family off whacked practice , her diet and weight gain , this which must off left you with more ? I like Betty,s idea the more there is on the outside looking in the better.

All the best
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline rondrond

  • Member
  • Posts: 1,712
Re: The Saga continues...
« Reply #4 on: February 01, 2014, 09:53:14 PM »
Wow, what an ordeal.  Is there anything there like Real Services (sometimes referred to as Council on Aging)?  I was wondering because many times, at least here, you can get a disabled person in a nursing home set up with an advocate.  It may take a little of the pressure off of you sometimes.

I really hope your medical situation stabilizes somehow.  Please take care of yourself!

Thanks BT65

I googled Real Services and the Texas equivalent is CBA (Community Based Alternative Living), which we do use when Katie is at home with me.

Medicaid paid for an aide to come to the house and bathe her, and clean her room and wash her clothes. 

They also paid for modification to the house i.e. wheelchair ramp and the handicapped bathroom.

As for an advocate, I was obviously very confused about the role of the Social Worker at the Nursing Facility as when we found out that Katie qualified for Medicare and SSDI under the requirement of being a permanently disabled widow living in a Nursing Facility.

When we asked the Social Worker for help in the application process, she stated that she was not qualified or knowledgeable in Medicare, only Medicaid as they were a Medicaid facility.

This puzzled me as there are residents in the facility Katie has befriended who are on Medicare and the Facility has no qualms about taking all but $60 of their checks and any other resources they have.

One man get $9000(that is three zeros) a month in benefits, but only gets $60 of it a month.   WOW

She stated that we would have to do the application. So Mom and I applied for Katie and she was approved, but then, they were confused as they stated that she had already been approved since 2004.

Apparently Katie had started the process in 1994 when her husband died, but then came back surgery and two knee replacements and carpal tunnel both wrists...i.e. she was doped up on being in pain and pain killers and didn't remember.
 
I took over the house and took care of the boys until they were 17, whereupon they could claim their Social Security checks be sent straight to them, which they did and moved out as they did not like my rules. The house had too many bad memories, so we bought this house in 2000, and apparently, the 'in charge of all' 'know it all' brother forgot to put in a change of address for Katie.  (epic fail on my part)

If SSDI/Medicare sent the approval letter to the other house, we never got it.

What boggles my mind is that for the past 9 years, Medicaid has paid for everything. How could they not notice that she had Medicare?

Another kicker is that difference in pay from SSI to SSDI. Where did those checks go for the past 9 years? They assure us that it is 'under investigation' but I have a feeling that after 4 months and no word....it will probably remain at no word.

At this moment, to paraphrase The Walker Brothers  "emptiness is the place I'm in, nothing to lose, but no more to win."
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline rondrond

  • Member
  • Posts: 1,712
Re: The Saga continues...
« Reply #5 on: February 01, 2014, 09:56:34 PM »
Ron,

................. I like Betty,s idea the more there is on the outside looking in the better.

All the best
m


I like that idea too.  :)

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline rondrond

  • Member
  • Posts: 1,712
Re: The Saga continues...
« Reply #6 on: February 01, 2014, 10:13:07 PM »
Katie is doing a lot better. They are even starting a little therapy with her arms and legs.

There is a drug know as a Clot buster that if administered within a narrow window of opportunity from the time the clot forms that will break up a blood clot very quickly.

She is still in the hospital under observation and we haven't been given a discharge date yet.

My other little sister in the meantime was cooking and the oven when 'chunk' and locked into oven cleaning mode.

Whatever she was cooking was a tiny little charcoal at the end of the cycle.

me: "why didn't you trip the fuse switch?"

her: "I didn't know how"

What can I say? she is a blond.

Then if you turned on the microwave, the broiler came on. or the stove top, the microwave came on....

Her husband went to the store and came back with a new stove, oven, microwave, dishwasher, refrigerator and marble counter tops.

me: "uh Doug, did they have a 'bundle' special?"

him: 'Yeah"

He decided that if one appliance was failing it wouldn't be long for the others so might as well get it over with.

I have the extended warranty for my refrigerator on the desk and I haven't renewed as I haven't needed it for 2 years.

It seemed that every Holiday, when I needed it the most, something would go out....the ice maker, the compressor.....so I have gotten my moneys worth from the warranty.....

..but after two years, I figure I could have bought a new fridge with that unused warranty...

..now, watch it blow up tomorrow.

 

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: The Saga continues...
« Reply #7 on: February 02, 2014, 07:03:37 AM »
Nice hubby full off good sense , can I have one , don,t require warranty
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline rondrond

  • Member
  • Posts: 1,712
Re: The Saga continues...
« Reply #8 on: February 02, 2014, 11:11:26 AM »
Nice hubby full off good sense , can I have one , don,t require warranty

Doug is a good man and she got very lucky. She met him through a dating service after her high school sweetheart, bore him two children, and 20 years of marriage abandoned her when she lost her right breast to cancer.

His only fault is that he LOVES golf. Which is minor, I guess since he does own a golf shop, and provides for her very well. 

I have never had any luck on dating sites. We would 'hook up' and they would be hyped up on some drug....it seems they just wanted a drug buddy for the night....
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: The Saga continues...
« Reply #9 on: February 02, 2014, 08:48:12 PM »
Golf------ I do not get it ,which is a pity as many males in my family do and can talk about it with the occasional break for sustenance for hours.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline rondrond

  • Member
  • Posts: 1,712
Re: The Saga continues...
« Reply #10 on: February 03, 2014, 11:07:15 AM »
Mom had to deal with golf also as JW loved it.

Mom got over it after two Colonials and from then on, he would follow the game while she shopped....

I have quite a collection of golf shirts.


Katie was released from the hospital to the Nursing Facility today.

Life continues...with a new norm.
« Last Edit: February 03, 2014, 11:17:00 AM by rondrond »
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: The Saga continues...
« Reply #11 on: February 03, 2014, 02:20:48 PM »
Has the hospital stay been good for her , apart from dealing with the Blood clots ? Has the weight issue been addressed ? Remmember Ron there is a limit anyone can help another without there co-op All the Best
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline rondrond

  • Member
  • Posts: 1,712
Re: The Saga continues...
« Reply #12 on: February 05, 2014, 09:02:59 PM »
Katie's weight issue is ongoing.....

The hospital stay was good for her to have new surroundings....

It was also a bonus for me as Medicare paid for her stay....which meant the Nursing Facility had to give me a rather hefty refund on the check I had already written for the month....

...and....an...today..*sob*.....


I went and got my drivers license renewed...ooohhh...and...


awauuugghhh.....they told me to look at the blue dot in the middle of the column that..that....held the ...cccccamerrra.....

I had to look down to look at it..waaahhh....and...sob......

When he gave me my temporary license all I could see was .....

#@$%^&%/...booo..boo hoo hoohoo.....

TEN Chins....awaaauuuggghh,....


U-g-l-i-est pictooor...eevverrrr...................
« Last Edit: February 05, 2014, 09:14:53 PM by rondrond »
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: The Saga continues...
« Reply #13 on: February 06, 2014, 09:30:45 AM »
Oh dear, enjoy your eating sensibly new routine . Its funny I have the polar opposite problem but the same reaction.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline bear60

  • Member
  • Posts: 4,104
Re: The Saga continues...
« Reply #14 on: February 08, 2014, 05:39:22 PM »
Just checked in, and read your lastest post. Ron, I hope for the best for you.
Poz Bear Type in Philadelphia

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,915
Re: The Saga continues...
« Reply #15 on: February 10, 2014, 03:59:53 AM »
So you mean for the past nine years, Katie has been eligible to receive SSDI checks, but no one knows what happened to them??  Well, after dealing with an ongoing issue with Social Security for the past 7 months, I can believe they do not know what happened to them.  SS seems very inept, and you won't get the same answer from any two people.

I also do not understand how the social worker could say she does not know how to handle disability.  You're correct in that nursing homes will take all but a small pittance from someone's check. 

It all sounds very suspicious.  I wonder if there is someone out there who has been receiving Katie's checks and has not come forward so they will not have to repay.

Glad to hear Katie has been discharged from the hospital.  With nursing homes, you have to stay on their cases all the time such as with issues as weight loss etc., because they will do well for about a day, then it's like they drop the ball.  Good luck with this, Ron.  I do not envy you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline deibster

  • Member
  • Posts: 153
Re: The Saga continues...
« Reply #16 on: February 19, 2014, 11:15:44 PM »
Hi Ron,
I'm glad Katie is doing better and I pray that it's helped to lift your spirits. It might be worth it to get her Congressman to look into where her SSDI went if the COA advocate or lawyer or investigator - hint, hint, cannot find out anything. Was a direct deposit order filled out?

If not, the Postal Inspector would help find out what happened to the checks. The only problem is that they may have gone to the same address as the boys' checks and the boys might be in big trouble if they spent the money. If they kept it in the bank & can return it to Katie or the feds, they can probably work something out.

Try to take care of yourself & do something every few days to lighten your own mood. Big Hugs, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline bear60

  • Member
  • Posts: 4,104
Re: The Saga continues...
« Reply #17 on: February 22, 2014, 04:43:12 PM »
Hi Ron
Hugs.
Well, maybe we should start naming your chins.  hahaha

Joel
Poz Bear Type in Philadelphia

 


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