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Author Topic: spinning wheels  (Read 134589 times)

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Offline sharkdiver

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Re: spinning wheels
« Reply #50 on: March 13, 2008, 10:13:40 am »
You know Mikie, you guys are in my prayers daily.

I can see how this bringing back all kinds of memories. if is for me too, just reading what you are going through. You guys are strong and I know you will get through it.

luv,
Sharkie

Offline bear60

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Re: spinning wheels
« Reply #51 on: March 13, 2008, 10:38:25 am »
Mikie....your situation is bringing back memories for me too.  My partner Paul had a clavical port ,as well, where all of his intravenous medicine was administered.  Paul had CMV and was being treated for that when he collapsed and went into the hospital.  He died a week later.
Mikie....try to take a deep breath. You are doing the best you can. In fact I am sure you are doing more than most would be capable of.  Dont beat yourself up.
I too have been known to refer to Kurt as Paul ( my partner who died)....especially when I am anxious.  When Kurt went in the hospital for the knee replacement I practically had a heart attack when they told me he had developed anemia from the heparin administered for the blod clot and was being given whole blood transfusions. Now he is getting back to the gym and working out again.
Pray for peace.
Poz Bear Type in Philadelphia

Offline leatherman

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Re: spinning wheels
« Reply #52 on: March 13, 2008, 11:57:45 pm »
you know guys, one of the first people I really met around here was Emma - and only because we share a similar anniversary for our lost loves. Sadly I imagine that there are quite a few of us LTS's who are here because there are people here who can understand and share in their grief. I too have read threads here, remembered the past, and gotten sad all over again.  :'(

Personlly, that's why I try not to ever say those platitudes to people when someone dies. I don't think it gets better with time. I do think that the grief lessens though; but that kind of emotional wound lasts forever. Love doesn't stink; love hurts.  ;)

The only consolation that I've ever been able to give myself (having lost Randy, 7 cocker spaniels, and the cat) is that if I had the choice of never having them in my life at all, or only having them for that short amount of time with all that love, joy and companionship; well, then I'll take the short time together and try (even though it's hard sometimes) to keep the good memories in the forefront of my brain, rather than those sad times.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: spinning wheels
« Reply #53 on: March 14, 2008, 12:02:47 am »
Today had it good points and bad points.

First the bad stuff to get it out of the way.
I spent some time hiding out in the bathroom crying again. Jim was very "out of it" today. He'll doze off while talking and I swear he's begun to sleep with his eyes open - which is very eerie. Blame it on the fever, the meds, and that he hasn't eaten in about 4 days - but at least he's been swigging the ensure. He wasn't much better after returning from having the port installed. Since he was out of the room from 2p-6p, I kicked back on the hospital bed and got a short nap in. I wasn't certain though if he even knew when I left this evening. Jim did call me later in the evening and I ran back up (the hospital is about 15 mins away) for an hour while he was more alert and wanted some company.

I also found out today that Jim's tcell count is 119 and his viral load is 300,000.  :o So I guess we really can't put off the hiv meds till he's feeling better. I want to say they have switched the Atripla to Truvada and Kaletra; but I can't swear to it. There have been so many antibiotics (bactrim, flagyl, and a few others) and so many different doctors, I'm just going to claim I can't remember it all due to HIV brainfog rather than getting older. ROFL

Now for some of the better news from today.
Things actually went pretty well when I went to see my doc. We started with a good laugh about how much we've seen each other lately - at the hospital during the snowstorm, my picture in the paper and now at his office. (yes, he knew it was me in the pix right away too. My ponytail, sunglasses, and leather jacket are dead give-aways. 8) LOL I was also noticed by the cashiers at our local grocery store and the convenience store clerks where I get gas. Ah, don't worry. I won't let the fame go to my head.  :P)

For some reason no tcell count was returned. He said we could probably guess that it was 250 or 300. I had to laugh and point out that that in the last decade it's only peaked at 311 once, so let's use the more realistic 250 since that's what I've had for a while and they seem to be doing the trick. (although, there is a tiny chance I may be catching a cold. I keep pushing it away though and hope that some rest tonite and some cold med fix things up)

My viral crept up a hair from 75 to 189; but I had a big ol' blip up to 2754 at the end of Aug, so this slight increase was nothing. I've been undetect 4 times since 2004 but just can't seem to keep it there. So in the long run that was decent news about that result.

We talked about the smoking but he was pretty sympathic to my plight. We decided there are worse things I could be doing under the stress ::), so he wasn't going to fuss at me.

Of course, we talked about me and the meds too. Unfortunately between the drugs I won't take and the ones I'm resistant to, I'm stuck with a regimen that includes norvir. Sigh! (Won't Jim and I just be a pair back home in a month, both of us puking into our respective buckets. ROFL) We also chatted about the doses I've been skipping. While he doesn't, and can't, approve; he did understand how I'm caught between a rock and a hard place. (I talked about not "hanging over a toliet puking while Jim could be in the hospital dying"; and he talked about the "societal complications of adhereing to a regimen". ::)) I promised that I would try to start taking them again and he promised to make me have my counts done EVERY month now. :D

it's almost midnight now and I plan to start my bday off sleeping in my own bed! ;)

mikie
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Longislander

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Re: spinning wheels
« Reply #54 on: March 14, 2008, 12:09:50 am »
Mike
Through all of this it was nice to hear that Jim had a better day. It's your birthday now, right?. I'd like to wish you a happy birthday , but that seems a little silly.  Jim may not be home for your birthday, but maybe you can bring a little cake to the hospital today??

It's true that losing a lover doesn't get easier, but the pain does lessen over time.  I always said I was a very lucky guy to have had the most wonderful man for 7 years before he passed.

Share your thoughts of the similarities Randy/Jim with us online. I hope you can put that in the back of your mind otherwise while dealing with Jim's illness day to day.  ( I'm not sure this sounds right, I tried writing it twice, I hope you understand what I'm trying to say!)

Anyway, you're both in my thoughts, and I wish you all the best.

Paul

edited to say this was posted before reading Mike's last post... get a good nights sleep Mike!
« Last Edit: March 14, 2008, 12:13:38 am by Longislander »
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline BT65

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Re: spinning wheels
« Reply #55 on: March 14, 2008, 06:16:30 am »
Happy birthday Mikie.  I hope it's a peaceful one.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline AlanBama

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Re: spinning wheels
« Reply #56 on: March 14, 2008, 11:30:11 am »
Mikie,

Special birthday hugs to you today, my friend.   Some of us here know what you are going through....I have you both in my prayers.

Stay strong, take care of yourself as best you can. 

Love,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline bear60

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Re: spinning wheels
« Reply #57 on: March 14, 2008, 11:58:59 am »
Birthday Hugs Mikie :-*
Poz Bear Type in Philadelphia

Offline Iggy

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Re: spinning wheels
« Reply #58 on: March 14, 2008, 04:29:35 pm »
Happy Birthday Mikie! 

All my best to you and Jim.

Mark

Offline Queen Tokelove

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Re: spinning wheels
« Reply #59 on: March 14, 2008, 05:19:19 pm »
Happy Birthday!!!! :-* :-* :-* :-*
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline leatherman

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Re: spinning wheels
« Reply #60 on: March 14, 2008, 11:35:53 pm »
Thanks for the birthday wishes guys.  ;)
WooHoo! I've been poz for 16.5 yrs, had aids for 12 of those years, nearly croaked from PCP and pneumonia, and never ever imagined that I'd make it to 46.

I forgot to tell you about the package I found by our front door last night. My sis-in-law had sent me a cryptic email telling me to watch for the mail; but I wasn't expecting a package. What I saw when I opened the box was the perfect gift for Jim and I at this time. Inside were several magazines, several boxes of assorted munchies, a box of kleenex, a deck of playing cards, two other card games, a book of puzzles, one of those 20-questions electronic gizmos, along with a bday card for me, and a get-well card for Jim.

I knew I wasn't going to get what I really wanted for my bday (for Jim to come home); but I didn't expect this day to take such a bad turn. I had chatted with Jim this morning and he was doing as well as could be expected. My plans for the day were to visit him about noon, then go have my bday dinner and cake, and come back for another short visit.

However, I arrived at noon to find our end of the 7th floor hallway filled with doctors and nurses. It seems that Jim had a really bad night (diarrhea and vomiting, and he's too weak to get out of the bed now) and things weren't getting any better - things were actually getting worse. His fever was back up to 103, and the chills and shakes were back with a vengeance. They had him hooked up to several new monitors and back on the o2, because just moving around in the bed was sending his heart beat racing and his o2 level was terrible. After everyone consulted, they stuck him with another IV for another antibiotic, and then sent him for another ct scan to see if blood clots were forming because of the port they installed yesterday. They also decided that his situation was bad enough to move him out of his room and send him down to CCU  :( where they could monitor him more closely and more aggressively treat his myriad of symptoms. (you'd think being this sick, Jim's weight would be down; but down in CCU, we learned that Jim has actually gained 20 lbs from all the ensure he's been drinking LOL)

We've been living in that room so long, that it took me a couple of trips to move my pillow and blanket, Jim's clothes and my travel bag of clothes and stuff. I told the nurses, it felt like I was running away from home.  ;D

Luckily by the time they transported him for the scan, they had gotten the fever back down so that the chills stopped. For several hours, I followed while they moved Jim around the hospital - without any lunch, no cigarette breaks, and buzzing off some cold medicine.  :o

After getting Jim settled into CCU and doing so-so, I went over to my Ohio mom's for dinner (and I really needed some food by then and we had big ol' juicy burgers) and birthday cake (mmm, sugar buzz!). Oh, and my "mom" got me 2 muffin pans as a gift, so I can give the ones I've been using for nearly a year back to her.  ;D

Of course, I made another trip back to the hospital and had a little good news and bad news again. The good news was that Jim was a little more alert and watched a couple episodes of "friends" and nearly all of "house" before getting very tired again. The bad news was that his body, from about mid-chest down to his feet, is quite puffy, and there's blood in his urine.  :( With all these problems now, I don't know how Jim is going to be when they start the chemo within another day or two. :'(

It was very hard tonight explaining to Jim that I needed to leave. I explained that he hasn't seen me crying, because I'm trying to stay strong and supportive for him. The doctors talk like all this will still get better, so I've been trying to stay optimistic so that he would feel good about fighting this off. I made sure that he understood that I still think he's got a chance, so I need to take care of myself too, so that I'll be able to assist him when he does comes home. I was leaving him in the best possible care of the hospital and didn't want to be in the way of the nurses if he had another bad night.

A week ago, I drove home in a huge snowstorm, afraid I was about to lose Jim. A week later, after an afternoon of rain melting the snow-pack, I drove home in "thick as pea soup" fog, still afraid that I'm about to lose Jim.

mikie
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Queen Tokelove

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Re: spinning wheels
« Reply #61 on: March 15, 2008, 01:48:30 am »
Mikie--

Sorry about the turn of events with Jim. Still no results from the previous biopsy? No clue to anything yet? My heart goes out to both of you but mostly for Jim and the agony he must be going through. And I can imagine how it is affecting you in return, your stress levels must be through the roof. Please take care of yourself, we don't need both of you sick. You both are in my thoughts and prayers... :-* :-* :-*
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline BT65

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Re: spinning wheels
« Reply #62 on: March 15, 2008, 07:05:21 am »
Mikie, I'm so sorry to hear about this.  Keep on hanging in there..
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Iggy

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Re: spinning wheels
« Reply #63 on: March 15, 2008, 08:11:17 am »
Damnit Mikie,

This is just the worst rollercoaster right now for you two and there are too many damn drops and not enough highs.    A friend just told me something in an email and I want to quote it to you because i think it says well what all our thoughts are for you and Jim right now,  "I would say you're in my prayers but somehow prayer doesn't meet up to my thoughts for you."

Thinking of you and Jim.

Mark

Offline bear60

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Re: spinning wheels
« Reply #64 on: March 15, 2008, 10:32:03 am »
You are in my thoughts. The only thing I can say is that you are doing well to take care of yourself and be there for Jim.
Poz Bear Type in Philadelphia

Offline sharkdiver

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Re: spinning wheels
« Reply #65 on: March 15, 2008, 11:05:11 am »
Prayers are always good, just depends how you do it or how you believe it I guess.
But anyways.. you ARE in mine.

Sharkie

Offline leatherman

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Re: spinning wheels
« Reply #66 on: March 16, 2008, 12:15:51 am »
Whether it your prayers or your thoughts, it's all positive energy wending it's way to Jim. At this point in the game, we'll accept it all with heart-felt gratitude and appreciation.  ;) :-*

The nurses tell me that Jim didn't have too bad of a night last night. They got him shaved and washed up since he had been too sick for me to do that the last couple of days. Being clean always makes you feel better. ;)

Still no day set to start chemo. They're hoping to get him a little better first. The ID doc pointed out that as soon as his viral load starts dropping from the meds, that should help him start to feel better too. (Goodness knows, I remember how sick I felt with a vl of 300,000). The docs are also optimistically saying that if he doesn't get any worse again, that maybe tomorrow they'll move him out of CCU and back up to our old floor. (though another day would give me a little more of a break. I don't worry near as bad being away from him right now when he's being watched by his own personal nurse.)

He had a couple pieces of toast, milk and grape juice this morning and had nearly the whole bowl of chicken broth at lunch. After that though, they shot him up with a pain med and he zonked out. Even though I've gotten some decent sleep myself the last couple nights at home, I couldn't stop yawning today, so I went home, curled up on the couch with the puppies, watched some tv and zonked out myself.

About four hrs later, Jim woke up very disorientated and upset. He called me but just wasn't awake enough to understand that the call went through. By the time I got back to the hospital, he was much more alert. (the nurses decided to half the dose of the pain med the next time he needed it, since it messed him up so badly) He ate a grilled cheese sandwich and a bowl of chicken broth today which was very heartening to see.

So this wasn't too bad of a day, all things considered.

mikie
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Queen Tokelove

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Re: spinning wheels
« Reply #67 on: March 16, 2008, 01:42:54 am »
Glad it was a better day for both of you. Hopes Jim will get out of CCU and back into his own room.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline BT65

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Re: spinning wheels
« Reply #68 on: March 16, 2008, 07:05:20 am »
I'm glad it was a better day.  Hopefully things will continue to improve from here.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline SoSadTooBad

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Re: spinning wheels
« Reply #69 on: March 16, 2008, 11:46:25 pm »
mikie - really glad to hear that Jim is doing a bit better - it is heartbreaking to read your account of Jim's struggle, but at the same time, very encouraging that he is improving.

will keep the good thoughts coming from here...     


Offline leatherman

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Re: spinning wheels
« Reply #70 on: March 17, 2008, 03:57:18 pm »
Sorry I didn't get an update online yesterday. It wasn't such a good day for me.

The day started with Jim calling me several times asking me when I was coming to the hospital even though the night before we had decided I would be there by noon. I kept telling him I'd be there soon. What I didn't tell him was that I woke with a 102 fever and was trying to get my temp down, so that I felt well enough to drive. I made it to the hospital by 11, and I had hardly gotten into the room before Jim started fussing at me.

I should interrupt my story here to bring you up to date on Jim's condition. His fever had stayed down close to normal for about 24 hrs finally. From the waist down, his body is quite swollen from a buildup of fluids. They had started a transfusion of 2 units of blood, so there are enough hanging iv bags now to require two pumps and two iv stands. Also Jim was pretty upset because the cancer doc had stopped by and, once again, mentioned about sending him home soon. Of course, he is in no shape to come home yet, so I believe Jim misunderstood the doctor, thinking he is about to be sent home to die.

So I arrived, and Jim started fussing. He actually said that I haven't been there enough for him through this crisis, and that he was upset with me for staying at home so much. I bit my tongue and didn't say anything until the nurses left the room. I pulled out my thermometer and popped in my mouth. In response to his questioning look, when the thermometer beeped, I showed him that my temp was up to 101 again. I calmly explained that for the last three days I've been having a fever myself. I explained that the nurses might very well not allow me to visit him if they thought I was sick. I explained that every time I've gone home, I've barely had the energy to feed the dogs much less myself, and that most of my home time is spent sleeping so I don't get sick. I explained that if I ended up in the hospital too, then I sure couldn't be any help to him.

Lastly I explained that unless the doctor said that he was being sick home with hospice care, then he wasn't being sent home to die. Personally, this cancer doc just doesn't know what he's talking about. He talked about sending Jim home a few days ago to continue recovering before starting the chemo - that was the day before Jim got sent to CCU, so obviously this doctor isn't paying attention to the big picture. Jim just isn't well enough to come home yet.

What I didn't say to Jim, was that when I lay in the hospital thinking I was going to die with pneumonia those two times, I was all alone. I didn't have someone to hold my hand. I didn't say that he should suck it up and tough it out. I didn't tell him that I've been missing meds so I wouldn't puke and could be there for him. I didn't tell him how much his words really hurt me. I didn't tell him how absolutely exhausted I am. I didn't tell him about how the dishes and clothes are piling up, as I just don't have the energy or time to do anything when I'm at home for a few hours each day. I didn't talk about driving through the freaking blizzard. I didn't tell him about how I still worry that he'll never get out of the hospital and I'll be left without a partner and without a home.

Tomorrow will be the 14th day that Jim has been in the hospital.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: spinning wheels
« Reply #71 on: March 17, 2008, 03:59:17 pm »
As you can tell, I have been experiencing some anger later. Towards everything. Why in the world do nurses wake you up to give you a sleeping pill? Is it a rule in a hospital to not let anyone sleep longer than 2 hours at a time? (Isn't that torture??) Why do all the old people drive the wrong way in the parking deck? Why is the McDonalds at the hospital the slowest, most ill-run I've ever been in? Why did that bitch cashier not give me back my 4 cents when I gave her 11 dimes to cover the $1.06 cost of a small coke? Why hasn't the city patched any of the freaking pot-holes, no, make that, craters in nearly every road in town? Why has my 10 am mail delivery been coming after 12 noon since the day after the snowstorm?

So I was still a bit perturbed when I went to the hospital this morning. I thought I'd have a change of mood when I arrived and saw Jim up and sitting the recliner.  Jim had been doing a fair bit better this morning and had been in the chair for over an hour. I was, and am, quite pleased to see him much more alert, awake and moving about after the last few days. However, not long after I got there, he was ready to go back into the bed, and he promptly feel asleep.  >:( Argh! As glad I am to actually see Jim in a better condition, I really didn't need to be there to watch his sleeping and could have stayed home longer.

Although I know I've been complaining a bit these last two updates, please don't misunderstand. Many of the times that I've been at Jim's bedside was no trouble to me. Many of those times in the last two weeks, I've been there because the situation was truly that dire. I would have been more distressed to have been at home and found out that I was not by his side if he had passed away. However, this has been a very trying time, and I guess I'm just running low myself and running out of ways to juggle all of this.

About the time I was fed up enough to leave this morning, my doctor stopped by to talk with Jim. He wanted to tell us that there had been some concern about Jim's kidney functions that could have been caused by one of the HIV meds. However, the results were already coming back better, so this is an issue that needs to be monitored some; but isn't a problem. Then he gave us some GOOD news - because Jim's numbers (heart, bp, kidney, potassium, etc) were all improving, they were transferring him OUT of CCU. WooHoo!  ;D So after getting him settled into his new room (on floor 2 this time), I'm home for the afternoon and I'll probably go back for a few hours this evening.

So you don't worry too much about me, I should let you know that I have been eating better the last two days, I have taken my meds, and I'm neither congested or running a fever today.

I guess what I really want you to take away from today's update, rather than my griping, is although Jim is really still quite sick, two weeks later and with chemo in his future, we are finally seeing a glimmer of recovery for the very first time. ;D

mikie
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline AlanBama

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Re: spinning wheels
« Reply #72 on: March 17, 2008, 04:36:28 pm »
Hi Mikie

Glad things seem to be looking up a little today!   Being out of CCU is a good thing!

I totally understand how you are feeling, about him being upset with you.   Sometimes, when we are alone, fear, anxiety and frustration leads us to lash out at those whom we love and who love us the most.  Sounds like you are doing a good job of compartmentalizing everything, and keeping the big picture in mind. 

Honey, he knows you love him and that you are there for him.   You just happen to be the only one 'present' for him to complain to and bitch at.  I'm sure he's very frightened about his situation.  Who wouldn't be?   Sometimes loving someone means turning a deaf ear to some of the hurtful things they say to us out of fear.

Let's hope things dramatically improve over the course of this week.

Love, hugs, and prayers......

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Iggy

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Re: spinning wheels
« Reply #73 on: March 17, 2008, 04:49:26 pm »
Mikie,

Good news indeed about the move out of CCU.  Take some heart in that good movement.

You are a better man than I to be so calm in the face of not only Jim's illness and uncertainty but his lashing out at you from pure fear and not knowing who else he can expose his frustrations (no matter how inappropriately voiced) at you.

I am worried however about you and you not taking care of yourself.  You aren't going to do either you or Jim a favor by being hospitalized yourself. 

Please try whatever you can to get some care for yourself - even if that means angering or even hurting Jim's feelings to a degree.

Mark

Offline BT65

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Re: spinning wheels
« Reply #74 on: March 17, 2008, 06:25:10 pm »
Mikie, glad to hear some good news.  You guys continue to be in my thoughts.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline sharkdiver

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Re: spinning wheels
« Reply #75 on: March 17, 2008, 09:49:28 pm »
Mikie

Yes the lashing out is alarming and hurtful.

You know my story, so I don't need to get into it but...

 One day a wonderful nurse pulled me aside (when the tempers were a little hot)  and told me that when someone is very very ill, it's normal (and appropriate) for them to be angry and be nasty with the ones that are caring for them and love them the most. She continued by saying  it was because they are scared and feeling out of control. You are the one thing steady and constant in his  life at this moment, just remember that and keep going.
 Needless to say, I was able to handle it after that.

take care and be strong
Sharkie

Offline Queen Tokelove

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Re: spinning wheels
« Reply #76 on: March 18, 2008, 02:50:08 am »
Glad that Jim is feeling a bit better. Sorry to hear that you haven't been but knows why it is taking it's toll on you. Stay strong and try to keep your head up.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline leatherman

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Re: spinning wheels
« Reply #77 on: March 18, 2008, 08:03:57 am »
thank you so much for the encouraging words, my friends. Part of me understood that Jim didn't really mean what he said (that's why I didn't lash back at him); but part of me was still hurt enough that I had to vent and get it off my chest. Your feedback not only gave me a little more insight about the situation (it's always easier to be objective from the outside  ;)); but also helped ease a little bit of the sting I was feeling. (it also made me think back to those college pysch courses I took way back when. LOL)

It's funny but I don't feel "brave", "strong", "wonderful" or any of those other kind words so many people have used about me lately. The lesson I learned from losing Randy has been the only thing that has gotten me through so many hard years and has given me the strength to deal with this crisis: there's only one problem that can't be solved - and that's death. Anything else, and I do mean anything, with some effort, patience and persistance can be made better.

I'm hoping now that the doctor's efforts, my patience, and your persistant thoughts, prayers, and well-wishes are finally turning the tide.

I visited with Jim several hours this evening (I wanted Taco Bell for dinner anyway, and it's halfway between our house and the hospital), now that he's all settled into the new room and another new batch of nurses. (Lord! I'm going to have to bake an even bigger batch of muffins this next time [the batter is ready to bake every ten days] to have enough for the great people in CCU and now Floor Two. LOL) I'm very happy to say that he was still doing better! A physical therapist was in this afternoon, and had him up and walking a few doors down the hall and back. Plus after all those antibiotics had made him quite incontinent while in CCU, it was good to see him be able to get out of the bed and hobble over to the potty chair. (Hey! you take the victories where you can!) With Jim so much more alert now, we finally got around to going over the bills that we had planned to discuss on the day he ended up in CCU.

Even though Jim was scared, frustrated and lashing out at me yesterday, tonight his true colors shone forth. Out of the blue, he apologized for yesterday (and I know that NO ONE has mentioned my gripes to him). Ah, there's that man I love! I didn't make a big deal out of it but explained that I understood why he said what he did out of fear, and that I also appreciated his apology too.

Although I'm very glad to have had some better news to pass along, please don't let us out of your thoughts and prayers just yet, as there still a long road ahead of us - and we still haven't even made it out of the hospital yet.

mikie  :-*
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline bear60

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Re: spinning wheels
« Reply #78 on: March 18, 2008, 08:33:55 am »
I just stopped by to let you know that I am thinking of you.

Joel
Poz Bear Type in Philadelphia

Offline Iggy

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Re: spinning wheels
« Reply #79 on: March 18, 2008, 08:40:56 am »
It's funny but I don't feel "brave", "strong", "wonderful" or any of those other kind words so many people have used about me lately.

Who says we need your agreement in calling them like we see them?  ;)

Your silent bravery and strength have been very apparent to all of us through this time.

I'm glad to read that Jim is regaining his sense of self and I wish the best for his continued recovery of strength.

Oh - and cut that Taco Bell shit out right now - your body does not need the additional stress of that crap "food" at this time.


Offline leatherman

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Re: spinning wheels
« Reply #80 on: March 18, 2008, 10:42:10 pm »
Just a short update tonight because I'm really, really exhausted today.

Finally after 7 weeks, Jim hasn't had a fever in over 48 hrs now!  ;D and he's doing as good as he was yesterday. WooHoo!

I spent part of the afternoon with one of the hospital social workers getting stuff together to run the gauntlet of applying for medical aide to cover the expenses and medicines. A bone marrow biopsy is scheduled for 8am, and they decided that Jim's kidney function numbers are in the right range now - so they'll be starting chemo tomorrow.

Goodnight all, I'm heading to bed before I fall asleep in front of my monitors.  ;)
mikie
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Longislander

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Re: spinning wheels
« Reply #81 on: March 18, 2008, 10:48:00 pm »
Hope you can can get a good nights rest Mike. I wish Jim great success with his chemo.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline BT65

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Re: spinning wheels
« Reply #82 on: March 19, 2008, 09:49:32 am »
Mikie, thinking of you and Jim as he starts the chemo today.  I hope things go as well as can be.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline Queen Tokelove

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Re: spinning wheels
« Reply #83 on: March 19, 2008, 10:19:39 am »
Glad to hear Jim's fever has broken and he is doing well enough to start chemo. I know you are still concerned with bills and stuff but remember to take care of you. Maybe I missed it but has your ID doc said about you? I remember you saying you had a fever and was hurling. Are you feeling better? Wish I was there to help you out even if it was just playing maid every little bit helps. Take care of yourself, Boo...
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

Offline leatherman

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Re: spinning wheels
« Reply #84 on: March 20, 2008, 08:59:05 am »
My hiv has never liked mornings much so I wasn't at the hospital yesterday when Jim had the bone marrow biopsy done at 8 am. Since they did the procedure in his room, I would have had to probably sit in the hallway anyways, so it's just as well I wasn't there then.

Jim was pretty drugged up afterwards and zonked-out, so I got to talk to ALL the doctors myself for a change. (it was like a parade of doctors going through Jim's room for about an hour. LOL) The kidney doc said his numbers were continuing to slowly improve, my ID doc talked to me about the current meds Jim is on, and finally the IV nurse told me about the chemo that was going to be started up later in the afternoon.

So while Jim slept off the meds and got a 4hr IV drip prior to the chemo, I got some lunch and some rest. Thank you all for worrying about me too. I've been getting a better grip on things the last couple of days. I have been eating better (even if some people don't think Taco Bell is any good. LOL). I've gotten in some naps, along with 8 hrs of sleep each night. I haven't had a headache or fever in the last two days. And I started taking my meds again. I've still been really tired; but there's nothing I can really do about that but keep trudging along. Maybe in a few more days, I'll be able to bring my honey home and the both of us can just lie around, do nothing, and go nowhere.

Maybe I missed it but has your ID doc said about you?
By the way Queen, my vl went from 75 to 189. I've been having these kinds of blips over the last year or two, so the change really wasn't anything to be too concerned about. Stupid lab didn't do a tcell count though, so we're just guessing I have the same 250 or so that I've had for the last couple of yrs.

I went back to the hospital at the appointed time to be with Jim for his first chemo treatment. Again, I was pleasantly surprised at how nice and helpful another nurse was towards us. The IV nurse explained many things about Jim's port, the chemo treatments, and what Jim might expect to encounter in the next few weeks. It took about half an hour for the nurse to push the meds into Jim. After hanging around another couple of hours to see if Jim would have any effects from the chemo, I called it an early evening and went home to eat and watch Idol.

I fell asleep on the sofa and never saw more than about halfway through Idol. I woke up quickly when the phone rang around 1030 though. Thankfully, Jim was still doing fairly well (no side effects after 6 hrs WooHoo!); he just wanted to let me know that they have moved him to another room again. Now he's up on the 8th Floor where they actually handle the chemo patients.

So things are moving forward.  ;D

mikie

ps I also got things started with welfare and Social Security. Tomorrow, they're planning on doing more chemo on Jim.
« Last Edit: March 20, 2008, 09:10:11 am by leatherman »
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: spinning wheels
« Reply #85 on: March 20, 2008, 04:31:30 pm »
Another busy morning!

I started this morning feeling a little crappy as usual LOL (and I slept wrong my neck, so it was killing me!) However, I got in touch with Social Security and started that procedure (yesterday the hospital social worker got our welfare paperwork faxed off). I got a phone interview scheduled for Jim for April 2, which was good since I can't even say right now whether he'll be out of the hospital by then or not. Then a quick shower and it was time to head up to the hospital.

When I got to Jim's new hospital room, he wasn't there! They had decided to do an ultrasound on Jim's legs to verify that there weren't any blood clots contributing to the fluid being retained, swelling Jim lower abdomen and legs. Not long after he was returned to his bed, the parade of doctors began again. LOL

Also a rep from the local ASO showed up - which was good news, as they'll be able to help with the medical expenses, meds, etc. until welfare and SS come through. Jim wasn't really in a good enough condition to deal with all that after the doctors; but as I've been through the process myself so many yrs ago, I took the rep down to the family waiting area and we tackled the paperwork together.

Today's biggest problem though is Jim's mental health. Being on the "outside", I can see that things have begun to turn around (at least, that's what I have to tell myself and try to believe), even if there is still a long way to go; but poor Jim, after 17 days in the hospital, seems to be even more depressed - if such a thing is possible.

Of course, I'm not really "outside" this problem enough to be the help he needs for this issue. Not only don't I have the training to be able to help someone in this condition; but all this directly effects me too - and I'm dealing with my own massive depression because of what the situation is and still could be. (Props again to my ID doctor who was doing rounds today. Every time he visits Jim, the doctor tries to point out the progress that has been made and tries to bolster Jim's spirits.) Also, because I'm having to deal with everything, means that I can't always be "cheerful" enough to help Jim out emotionally. Being realistic and handling this crisis has meant that I've had to "compartmentalize" alot of my own emotions so that I can talk to the docs, sign forms, follow what's happening, and give care to Jim (helping him to the toilet, packing up for room changes, helping keep his hair brushed and him shaved). I'm sure in "business mode", I probably do appear to him to be rather "cold and unfeeling" at times. But I NEVER forget to kiss him when I arrive and leave, and to touch him (hold his hand or rest my hand on his leg) as much as possible.

Since this issue is just too much for me, I've done the next best thing - asked our friends for help. Of course, they've all been willing to help out since the very first; but there really hasn't been anything anyone could do. (I posted our address at the first and requested get-well cards, and now there's about a dozen cards traveling with him from room to room. My Ohio mom has fed me several times and been a good shoulder to cry on a few times - conveniently, her house is near the hospital and not far out of the way on my way home).

Today, I started calling around to get our friends to just call and talk, to lend Jim the support he so badly needs. Everyone understands that Jim hasn't wanted visitors (especially as sick and incontinent as he's been) and that between the meds and his illness that's it's a struggle for him to talk much; however, I think some friendly voices will be helpful. If Jim is going to overcome all this, we had to somehow work through the depression. He's got to feel that's there is some hope; he's got to try to start moving more; he's got to talk to people; and at least pretend that he's got a life to lead.

"Recognizing one's own limitations" (some more of that psych BS LOL I'll have to remember that and use it to impress my doctor when I go back the end of April) isn't always an easy thing to do - especially when you're a Picses who wants to help everyone and fix everything LOL; but I've been sick myself long enough to know that sometimes you just can't handle it all. So our friends are planning some calls to Jim over the next couple of days, and a few are coming over this weekend to help me get caught up on laundry, dishes, etc. (Some visitors at the house will sure help our poor dogs too as they try to deal with all this. The poor pups have been alone so much!)

Still no more fever for Jim today  ;D, and more chemo is scheduled for Fri.

mikie
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline BT65

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Re: spinning wheels
« Reply #86 on: March 20, 2008, 06:40:54 pm »
I'm glad you've got friends who are going to help you, Mikie.  It sounds like you'll really be able to use their help.  Still thinking of you guys.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline bear60

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Re: spinning wheels
« Reply #87 on: March 21, 2008, 09:02:56 am »
Hi Mikie
I stopped in to see how you are doing and say hello.  I am so glad you have the network of friends to help you.  Its good. Keep up your spirits.
Poz Bear Type in Philadelphia

Offline Snowangel

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Re: spinning wheels
« Reply #88 on: March 21, 2008, 09:14:44 am »
Hi Mikie,
I have been thinking of you and Jim.  Thanks for keeping us posted.  I am so glad you reached out to your friends. I hope you are not getting anymore snow that is the last thing you need to deal with right now. Take care,
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline leatherman

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Re: spinning wheels
« Reply #89 on: March 21, 2008, 02:58:31 pm »
Of course, I should have known that life wouldn't let me get by saying I couldn't do something.  ::) During last night's visit, while we watched one of our favorite shows (Smallville), Jim brought up how worried he still was and how tired he was of being sick. I talked about my 4-day and 5-day stay in the hospital, along with Randy's 9-day stay. I told him that I could understand how not only terrifying a stay like that can be; but how soul-crushing tiring that long of a stay can be. I can only imagine how horrible he must feel inside as day 17 turns into day 18.

I explained how a week ago, when talking when our friends, I had guessed that it would probably be at least another week before he was released. Although those plans had been delayed by the 4-day stay in CCU, seeing the improvements already, I could see some light in the tunnel and could now hope that he might be released before the end of another week. We have a diagnosis now; the hiv has been treated for a week and a half; already one chemo treatment was done and another one would be done soon. Although things were still rough, things are moving forward and not backwards anymore. Results of the treatment might take some time but each day of treatment would be taking him further away from sickness or death.

I can't tell you that Jim's attitude miraculously changed last night; but after our talk and several calls from friends last night and this morning (bless them all! I put out the word and they came thru!), he didn't seem to be feeling as lost and adrift as he had been earlier in the day. Several more of our friends have called me and made arrangements for continuing the support calls throughout the weekend.

I was back at the hospital this morning and am glad to report that this is day four that Jim has not had a fever.  ;D The bone marrow biopsy results had finally come back and there's NO cancer cells in his marrow.  ;D Although he's still not eating very much, he has been eating some every day now. Jim was very sleepy while I was by his bedside but he did tell me that another chemo treatment won't be done again for 2-3 weeks.

Although I was there for nearly five hours, it wasn't until I was about to leave that he told me the most distressing news from his doctors this morning - he probably won't be released for another couple of weeks!  :( Obviously he didn't want to talk about that, so I didn't question him about the reasons why; but by the time I got to the elevators, I couldn't help but cry. I know that his condition has gotten better during this last week; but another couple of weeks is going to seem like years!

Two days ago, we had another snowfall of almost an inch; but thankfully the recent rainy weather took care of that and had finally gotten rid of the almost all of the remaining snow from that big storm a few weeks ago when our hospital adventure began. Now, four to six inches of snow is predicted to fall tonight, so I might have an "interesting" drive in again on Sat. morning. I'll tell you, Winter can't be over soon enough for me. Maybe when Spring finally does make it to Ohio, I'll finally be able to bring my honey back home.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: spinning wheels
« Reply #90 on: March 22, 2008, 11:51:27 pm »
WooHoo! Finally a day all around that was good (well, as good as can be under the current conditions.  ;) )

After yesterday in which Jim was "kinda out of it" for most of the day, today was so much better. He was awake, alert, and more talkative than he's been in nearly two weeks when I arrived in the morning. He had eaten breakfast, and felt good enough to have the physical therapist walk him around the room a little and move him to the chair to sit up for a while. We even went over the bills and got checks written up before he started to tire out. At lunch (around 1:30), his pain meds kicked in and he zonked out, so I headed home.

At home this afternoon, my friend Angie and my Ohio nephew Ritchie came over to help me out at the house. While Ritchie vaccuumed the downstairs (and he did a better job than I do!), his mom handled up my sinkful of dishes. I finally got to put away the clean clothes so I quit living like a vagabond out of the laundry baskets - even though I still have my travel bag all packed with the essentials of living at the hospital. Then I got to spend some time (on a very nice sunny, but chilly day; after the 1/4 inch of snow melted from this morning) in the big backyard playing with the dogz. While Angie was mopping in the kitchen to finish up and about the time I was getting tired, Ritchie came out and played ball with the dogz some too. It was an excellent, if not restful, afternoon.

Back at the hospital (with some more Taco Bell. LOL Hey! Jim has always been a fincky eater; so since it's just me getting food, I getting all the stuff he won't eat. LOL) Jim was up and alert again. WooHoo! He felt good enough (and was getting another blood transfusion due to low platlets from the chemo) that we got his hair washed up, teeth brushed, and him generally spruced up. They wouldn't let me shave him again (well, to catch the spots I missed the other day) so he wasn't accidentally nicked and bled to death or something horrible. (So, okay, the scruffy look is hot, and we'll just leave him unshaved a day or two. LOL) After that, we both stayed awake and watched the Matrix before calling it a night.

Hopefully, today's transfusion will help tomorrow be another good day as we have made plans for my Ohio mom and a good friend of ours to come up for a short visit with Jim. I think Jim is a little fearful of seeing anyone; but I think getting over this hurdle will help him move forward. The phone calls have already been helping.

I'm just so very excited still that today (day 19) was finally the first day without any more new bad stuff happening. It's about time for some good to be happening.  ;)  ;D Your thoughts and prayers are finally kicking in!  :-*

mikie  ;D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Snowangel

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Re: spinning wheels
« Reply #91 on: March 22, 2008, 11:57:56 pm »
Mikie,
Glad to hear you such a good day and that Jim was in good spirits.
I love Taco Bell every once in a while too ;)
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline Longislander

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Re: spinning wheels
« Reply #92 on: March 23, 2008, 01:08:15 am »
Sounds like a much better day for you guys! Was good to read after all these days. Here's hoping for many more days like today while you go through this~

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline BT65

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Re: spinning wheels
« Reply #93 on: March 23, 2008, 07:54:44 pm »
Glad to hear this Mikie.  Hopefully things will continue to go upwards.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline leatherman

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Re: spinning wheels
« Reply #94 on: March 23, 2008, 11:17:13 pm »
omigosh! Two good days in a row! I'm going to get spoiled. LOL

Jim was up and out of the bed by the time I arrived this morning. Things were going well (kidney numbers and sodium levels are back to normal and the edema is starting to go down and his legs are nearly normal looking again). So well in fact that the docs have changed their opinion and are saying that he "might" be able to get released by the end of this week. WooHoo!

Things got a little touch-n-go for a while though. After all his exertions this morning, Jim suddenly got very tired about the time our friends were supposed to come up and visit. "Not to worry, my love", I told Jim. "They'll understand if we postpone their visit for a few hours. It was still early in the morning and they weren't really ready to visit yet anyway." Jim zonked out and after a 45-min power nap, suddenly woke and wanted to know when our friends were arriving. LOL They were just on their way at that time, and while we waited, several more of our friends called to wish us a Hoppy Easter and see how Jim was doing.

All the phone calls lately, and the visit from my Ohio mom today, really have done a world of wonder for Jim's psyche in the last few days. Being more alert and able to tackle this problem has helped him alot too.

After his pain meds kicked in, I left for the afternoon and went over to my Ohio mom's for an Easter feast. I was soooo stuffed, and soooo sleepy afterwards; but I still got two loners and four euchres to make my team the winners! Tucking a big bowl of banana pudding (with lots of nilla wafers!) and a slice of pecan pie into my hospital survival bag, I had something to munch on while Jim and I watched "Shrek" back at the hospital this evening. During the movie, we had a conversation that got a little deep for a while (facing up to your own mortality as you lie dying in a hospital will do that to you. been there, done that myself a couple of times); but it sure felt good having him take an active part in worrying about what OUR future is going to hold.

"Our future." God, what a wonderful thought to have after having spent these last few weeks worried to death about what "my future" was going to be if I was going to be alone and widowed for a second time.

hoping I can keep reporting better news this week, and bring this thread to a conclusion by bringing Jim home,

mikie  ;D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Longislander

  • Member
  • Posts: 2,489
Re: spinning wheels
« Reply #95 on: March 23, 2008, 11:39:15 pm »
We're hoping right along with ya Mike!
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline lucas clay

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  • Posts: 518
Re: spinning wheels
« Reply #96 on: March 24, 2008, 04:36:59 am »
I will keep my fingers crossed, love to hear good news

                                                     Lucas

Offline bear60

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Re: spinning wheels
« Reply #97 on: March 24, 2008, 08:59:57 am »
Mikie
I'll be hoping right along with all the rest of you.

Joel
Poz Bear Type in Philadelphia

Offline BT65

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Re: spinning wheels
« Reply #98 on: March 24, 2008, 09:06:28 am »
We're all hoping for the best, Mikie.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Queen Tokelove

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  • Smokey the Smurf
Re: spinning wheels
« Reply #99 on: March 24, 2008, 08:51:31 pm »
Glad to hear things are getting a bit better for Jim which means things are going better for you. It's great that you have friends that are supporting the both of you, it must really help I'm sure. Keep your head up!!!!!
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

 


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