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Author Topic: Been Swimming with Sharks...  (Read 1887 times)

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Offline rondrond

  • Member
  • Posts: 1,712
Been Swimming with Sharks...
« on: November 06, 2010, 09:11:35 AM »
(..i am not in this video...I just liked it..)

http://www.sandrostrips.com/video/immersione-con-lo-squalo-tigre/

Well, several have let me know that a year, and then some has passed.

It's not my fault, I don't even know what day of the week it is half of the time.

I got lost when I got bronchial pneumonia....again. This time was not as bad as the year before as I recognized the symptoms and went straight to the hospital.

After about a month of unproductive coughing, and hacking and trying to expel my lungs, I was finally diagnosed with COPD...I only smoked for one summer, but I was a bartender and all my lovers smoked, so...there it is.

The same day DrG gave me that news, I was supposed to get reclassified at the hospital to get my discounted services and meds. I must have been in shell shock and was not firing all my pistons as I had run out of Wellbutrin, and was too cheap to pay full price.

The financial screening services were not doing well either as only ONE employee showed up for work that day..and she was not pleased with us, and I didn't like her attitude, so ....one thing led to another,... I got pissed, then angry, then belligerant, then the next thing I knew I was yelling, and making a sweet brown a'hole of myself and I couldn't stop.....

Wound up gathering my paperwork, and flouncing out of the office and went home, ranting on my cell phone to mom and ....


got home and after calming down, assured her that I would fix it...somehow. That was July 19>>.>Oct 15, I finally got reclassified.. ::)  I guess they wanted me to learn a lesson...

In the interim, Daniel has showed up,  supposedly in between construction jobs.....he's still here and it's been a year...I have chewed my tongue out and stuffed it  ( a promise I made to Katie as.....

she fell in the shower
her knee that had just been replaced started to grind...
her leg and foot were swollen and hot....she wouldn't go to the doctor.

She detiorated to not being able to get out of bed: at all, fever..coldn move her bowels for thre days, and then...

they moved while she was on the bed pan....and she moved, and moved and moved an it filled the bed pan and kept coming and then she called for me to come help....


I didn't know none of it as she was 'sitting' on it all..so I had her roll over.....my COPD lungs shut down, and I had to flee the room, open the doors and stay outside trying to breathe again. Finally, there was something for Daniel to do that did not involve the XBOX 360....and I have to admit that he has been a champ and stepped up to the plate taking care of his mother.

When her head lolled to the side and she started to hallucinate, I hit that life alert button and ordered an ambulance. Two ambulances and a fire truck showed up and pretty much blockaded the street. ...the neighbors knew that that woman was going to the hospital. She had 'recovered' a little and started to object, and I wouldn't have none of it..she was going..period...end of story...she finally shut up.

Diagnosis:
septus: blood infection
cellulitis in her leg...put on antibiotics. She was hallucinating real bad and screaming. They kept calling wanting me, Daniel, or mom to come up there as we were the only ones who could keep her in this reality.

We took turns. If we left, she had to be restrained and tied to the bed.   ( she did not like that...not one little bit. Her leg looked like it was melting and was going to burst open. BIG yellow blisters that would expand and then go down and drain.. a night nurse washed her hair..which goes down to her waist. She just wrapped it in a towel...I unwrapped it and it had dried looking like it had been ratted up like the movie Hairspray. It took me two hours just to get the bottom untangled Then, I started to get these lesions on my arms and legs. Then they decided to tell us that.. that.... it's contagious.

I had to go home and take antibiotics and we had to clean the entire house. Daniel developed a red spot on his inner thigh, which cleared up after a week.

I get an announcement from Binder/Binder and SSI ...that I am going to go before an ALS Judge again. my Attorney thinks that I won. We'll see. I let her know that I had no faith in Binder, or SSI or doctors or anything, anymore and that I just refused to get excited about anything until it happens...

 Medicaid only keeps you in the hospital for a period of time. *announcement* They were going to move her to a nursing home. I was as depressed as Katie. We had come full circle. 15 years ago I had taken her from a nursing home, and now....there she is again.

*I felt such a failure. She was supposed to heal and walk again, and meet a man and get married so I could meet a man and ..well..you know....

So, she is in the nursing home, and they are stating that it will be temporary...until her leg heals. which, it was starting to finally look good and she finally stopped hallucinating.

Last week, Daniel was on duty and he noticed that her leg was red again and brought it to the nurses attention.

She already knew and stated that the cellulitis had returned and she was on antibiotics...Katie didn't know, we didn't know...this thing about privacy and not giving out a patients medical info has done nothing but irritate the foo out of us.....

then her lungs collapsed..
 her kidneys stopped working..her leg was swollen, red, and hot..I kept chiming in that she was on coumadin and that we were prone to blood clots....and guess what..they finally listened, did a doppler and found a blood clot behind her knee...so now she is getting lovenox shots in her belly and she's mad...we're mad....

her lungs are working, her kidneys are working....that leg is not working....she will probably be there during the Holidays...which is going to suck...

So, anyways, that's what I've been doing for the past year.


"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 BT65

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  • Posts: 9,841
  • Vegas baby!
Re: Been Swimming with Sharks...
« Reply #1 on: November 06, 2010, 02:35:53 PM »
Damn ! is about all I can say.  What a mess.  I actually had sepsis once, and it put me in a coma, but I didn't have cellulitis.  Poor Katie.

But, if the nursing home caught the return of the cellulitis, then that's good. It shows they're actually paying attention to someone.  I sure hope she heals well, and quickly, and can return home.

Hang in there, bud.  It's going to be a great day when you finally get approved by SSA.  Hopefully they'll go back a few years, and you can take a nice vacation.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

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  • Posts: 4,104
Re: Been Swimming with Sharks...
« Reply #2 on: November 06, 2010, 02:58:56 PM »
Hi Ron
Its good to see you back here.  I see things have been tough for you...and your sister.  I think if she was at home it would have strained you beyond your capability, so a nursing home seems to me to be a good place.  For now.
But you dont say enough about yourself.  I hear you about the COPD. But otherwise it seems you are pretty well right now.(?)
Joel
Poz Bear Type in Philadelphia

Offline leatherman

  • Member
  • Posts: 6,054
  • Google and HIV meds are Your Friends
Re: Been Swimming with Sharks...
« Reply #3 on: November 06, 2010, 03:30:36 PM »
wow! It's good to hear from you buddy
just sorry to hear about all that bad stuff. It sure sounds like you're doing all you can .... and then some!
Best wishes for better health to all of you and yours!

Hugs and happy thoughts to you!  :-*
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline rondrond

  • Member
  • Posts: 1,712
Re: Been Swimming with Sharks...
« Reply #4 on: November 07, 2010, 09:11:25 AM »

Bird Talk...




Speak of the Devil. and he will show up. Yesterday's mail run brought an envelope from SSA. I didn't open it for about an hour, terrified of what it could say. It didn't exactly say I had been approved or denied, it did go on about an upcoming phone interview with an SSA rep to discuss my financial and living arrangements since March 2010.

Mom is getting pretty savvy about these forms that she has to have notarized proving that she has has basically been supporting me. They also may ask for proof of what I'm about to tell them, which I think I have my bases covered with bank statements and gas receipts (which I had only saved in the visor to keep track of gas mileage) who knew that I would actually need them?

Now really, how many of you had to go through such thorough scrutiny? Of course, mom is on me about staying calm and keeping my mouth shut as for some reason, I just want to tell them where they can stick their 'nosey Rosie' noses. You would think that they thought I was living the life of a jet setting playboy. ok, ok, enough. ...I am obviously being paranoid.

I have even been cuttin my own hair for the past year *snip snip here, and snip snip there* I look like John Davidson/Englebert Humperdinck from the 70's...sans sideburns. 8)

My head has been hurting and my head feels like the fluids are sloshing around whne I move...I have over dosed on Coumadin. Called DRG and she simply said, "what is new in your diet?"

 ??  well, there;s this pomegrnate juice they have been touting all over the place so I thought I'd give it a try. well, it seems that it thins blood..reacted with the coumadin and super thinned my blood....so I don't get to drink it anymore.  :'(

...and I still have a half bottle in the fridge.....and I hate to waste money or food.... ::)



Betty. Katie did sleep the sleep of deat a lot in between her hallucinations. The main one was a woman named Vivian who had 4 kids running around her room and pouring water in all her medicine bottles ??

Then she went to the past and kept hollering that the twins were hiding at the head of the bed trying to scare her. She kept wanting me to pick up her leg and cross it over the other one and I kept telling her that that wasn't possible....had to get a mirror so she could cast her eyes on just what was going on down there.

SSA, if approved,  is only going back to March 2009,...Binder will get their fee, and I will probably get a haircut and a pizza.

Joel, all I want to do is stay home behind a locked door and have the world leave me alone...which, the more I want it, the less I get it. They ant me start a breathing therapy...some kind of nebulizing breathing  machine...not a CPAP...it is smaller...I keep telling them...JPS won't pay for it...and I have no money....I did get an advert from Medicare on it...

And because there is just no rest for the weary, I suppose I should start researching Medicare, and the supplementals and the fees and whatnot and just how much of my life in a fish bowl are they going to want for that?




 


"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 denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: Been Swimming with Sharks...
« Reply #5 on: November 07, 2010, 10:28:58 AM »
Ronnie glad you are back, I was gonna have to take that 600 mile drive to DALLAS/FORTH WORTH to do a check on you  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

  • Member
  • Posts: 2,472
  • Current ambition. Walk the Dog .
Re: Been Swimming with Sharks...
« Reply #6 on: November 08, 2010, 06:56:36 AM »
Dear Ronnie,

I am so sorry for the immense pressure in your life , although I can imagine it is hard for you to see all the time, but there is  such a strength that comes out off your post and I thank you for sharing it with us .

It was good to read that , Daniel , came through .

I hope that the services you and your family are entitled too finally begin to work as they should and that you can give more attention to your own health needs.

Take care and I will be looking out for your future posts
t



"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: Been Swimming with Sharks...
« Reply #7 on: November 08, 2010, 10:37:27 AM »
Ron
Is COPD....always the result of smoke or smoking?  Just wondering.
Anyway...I wanted to say that saving receipt slips is a small price to pay for getting qualified for disability.  Just throw everything in a shoebox and at the end of each week, month or whatever, sit down and go thru them.  You can do it.  We found Quicken to be a good program.

Best wishes
Joel
Poz Bear Type in Philadelphia

Online Jeff G

  • Administrator
  • Member
  • Posts: 10,771
  • How am I doing Beren ?
Re: Been Swimming with Sharks...
« Reply #8 on: November 08, 2010, 12:24:35 PM »
Hi Ron ... I cant believe I missed your thread here . So sorry about your sister and everything else that has been going on .

I'm glad you are back , its always good to hear from you my friend .    

Offline rondrond

  • Member
  • Posts: 1,712
Re: Been Swimming with Sharks...
« Reply #9 on: November 13, 2010, 01:12:23 AM »
Joel, they kept asking over and over if I smoked and I told them that I did for one summer (Camel non filter..if you're going to do something, do it right) and they scratched their heads and did admit that there were other circumstances that could bring about COPD....but did not share and I was too busy dry coughing to even think about it...

Whirlpool Galaxy M51:  I have really been enjoying the History and Discovery Channels this season. Also , of all things, the Cartoon Network, with Tower Prep and tonight High School Avalon, which, I thought was not as good as Tower Prep




Sept 30, I go a flu shot. 3days later, I got a sore throat and coughing and fever....I got the flu according to DRG.Having already had pneumonia and a very intense breakout of poison oak, I was feeling very close to death. ....but then I always do here lately.

My trip to the coumadin clinic did not go as planned.  I was there at 8am and proceeded to watch as this nurse would come out from a locked door and call name after name and the lobby emptied and then refilled and she kept calling every name but mine. I finally had had enough and jumped up in front of her stating..."I just have to say something, why are yo calling all these people who came in here after me, it's now 11am and I've been here for three hours" ...2 minutes later they called my name...the front desk had forgot to send them the info that I was here...sometimes you gotta complain to get something done.

I went to Walmart afterwards and while inside a thunder storm rolled over...I was glad to be inside. I didn't think I was going to get the groceries put away I was so tired, my back hurt, I was short of breath and my legs were shaking.

I took a long nap and woke with a very sore throat....oh no....I immediately started to gargle with warm salt water...I don't think I can survive a relapse...



"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

 


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