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Author Topic: spinning wheels  (Read 75762 times)

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Offline BT65

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Re: spinning wheels
« Reply #150 on: April 03, 2008, 09:57:43 PM »
I don't mind the teasing, really.  Just remember what they say about paybacks.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #151 on: April 03, 2008, 11:02:19 PM »
It's now day 32, so we're officially starting the 2nd month of Jim being in the hospital.

Jim's blood work was a little low again today, so he got another transfusion. While still being on O2, his pulse/ox count was in the low 90s this morning; but dropped to 84 by lunch. I sure don't see Jim getting out by tomorrow (fri) and the hospital usually doesn't release too many people on the weekends, so I'm not expecting to get excited about Jim getting released until sometime after the start of next week. He's going to have to have a major turn-around this weekend or even that is too optimistic of a view.

Although I had hoped to see the transfusion perk Jim up some, it didn't seem to have much effect at all - though hopefully his blood work will show some improvement by tomorrow. Instead Jim seemed to be worse off today. He was at best only semi-conscious part of the day, and he barely ate anything. I made him mad at me as I "nagged" at him to eat the cereal he ordered for dinner (it took an hour to get him to each 2 spoonfuls).

I had gone back to the hospital early (I was barely home today between the hospital visits and the long appt. at welfare where I got my yearly re-eval done and most of Jim's case handled until we can start the procedures with Social Security) because of a disturbing call I received from Jim. Before his dinner arrived, I had to keep prodding him awake to get out what was troubling him.

To be honest, I think he's about given up all hope. He says that he doesn't think he's going to survive this and that he doesn't know how much longer he can hold on. Four times (because he kept drifting off) I tried to explain to him that most of his blood work and bodily functions weren't that bad. I explained how I lay awake many nights thinking of what he was going through and what he chances were. I explained, through tears all four times, how I didn't want to lose him and that I wouldn't ask him to go through such "torture" unless I truly believed he could get through this.

How much did he understand and how much sunk in? I just don't know. Before I left, I at least got a half-hearted promise that he would try to hang on a little longer.

Tomorrow I'm putting plan 2a into effect. Rather than spend the night, I'm setting my alarm for very early in the morning. I have to get in contact with his GP and other doctors in the morning to get answers and their help. I need to know just how bad they think his condition is .If there is still a chance he can survive, then we need to do something to get Jim's mental state better or he's not going to be able to fight through this. If they really don't think he can survive, then I want to bring him home, and have better palliative care, so that his passing is easier and not in some cold hospital.

And as for me, well, the emotional trauma of seeing Jim in this state is killing me. I almost dread going to the hospital each time, putting on a happy-face, trying to motivate him, and saying all those supportive things; while inside my heart is being ripped apart seeing him in such an altered, dazed, and sick condition. I just don't know how either one of us is going to have the strength to continue if things don't turn around soon.

Somehow though I WILL hold on for as long as Jim needs me.
I just hope that Jim can hold on for as long as I need him.

 :'( mikie
leatherman (aka mIkIE)


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

Offline Snowangel

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Re: spinning wheels
« Reply #152 on: April 03, 2008, 11:23:29 PM »
Sorry things are so tough right now, Mikie.  I will keep you and Jim in my prayers.
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 JDPoz

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Re: spinning wheels
« Reply #153 on: April 04, 2008, 12:03:44 AM »
Mikie, I'm so sorry things are not working out the way you had hoped.  I wish you the one thing I seem to struggle with the most in my own life, to live it just one day at a time.  Please take care of yourself as best you can through all of this.
JD

Offline Longislander

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Re: spinning wheels
« Reply #154 on: April 04, 2008, 12:11:32 AM »
Ahh MIkie, I wish there was something I could do to make this all better for you guys.  You've been holding up pretty steady for 32 days now through all of this. Maybe today was just a bit of a breaking point. The frustration for you must be 100x the frustration we feel sitting helpless in front of our computers.

I'll be away for the weekend, but I'll continue to pray for you and Jim and pray that there is some good news to read come Sunday nite.

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 #155 on: April 04, 2008, 06:15:38 AM »
Mikie, I must say this was not what I wanted to hear about your situation this morning.  But, each day is new.  Keeping you both in my thoughts.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

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Re: spinning wheels
« Reply #156 on: April 04, 2008, 10:11:46 AM »
Hi Mikie
I have been busy but still have kept up with your thread here.  Its sad that Jim is still in the hospital.  I hope things work out for the best for both of you.  I admire you for having the ability to do as much as you do for Jim.  I'm sure he knows how lucky he is to have you on his side.
Joel
Poz Bear Type in Philadelphia

Offline leatherman

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Re: spinning wheels
« Reply #157 on: April 04, 2008, 06:40:38 PM »
What a horrible morning; but a better afternoon.

I got up (after hardly sleeping last night) and was at the hospital by 630am. I spoke with all of Jim's doctors and voiced my concerns. The docs explained that Jim's "altered state" was due to the pain meds and low O2. They all believed that his counts were stable enough and that going home would be the best thing for his continued recovery. So his discharge was finally scheduled for this afternoon.

Unfortunately, a few hours later, it seemed like everything was going to hell in a hand basket. Jim had gotten up (with my assistance) to use the bedside commodore. Because they had not given him any pain meds, he was moaning and crying out quite a bit. He assured me that he was as okay as he could be right now. However, he didn't listen to me and didn't wait to get help back to bed. His legs gave out, and he went crashing to the floor. Luckily this was another "student nurse day" at the hospital, and several came to help me get Jim back into the bed and cleaned up.

Of course, that incident sent me over the edge. While the nurses finished taking care of things, I ended up down the hall in the family waiting room, simply unable to quit crying. It seemed like my worst fears were coming true.

Ah, thank God for the nurses, though. By the time Jim's nurse finally found me, she had taken steps to get things handled. She contacted the docs, who still believed that Jim should go home today. Dr Nagasaki (not his real name but something like that LOL) emphatically stated that he believes that Jim will survive this and that maybe a home health care worker might be sent to help out for a few days - but NOT hospice care. (I told the nurse that I understood about all about hospice care, as it was 13 yrs, 11 months, and 2 weeks ago that I brought Randy home from the hospital and had hospice care for 9 days before he passed away)

So the nurse had already begun to made arrangements to get us some help. A hospital bed is being delivered this afternoon to our house (good! didn't I think that would happen and half-planned on it already? ;) ), along with O2. An ambulance will be bringing Jim home and helping to get him inside the house. And I also believe that they are arranging for some home health care worker to come over this weekend (not certain on all the details as my head is still spinning!) I made some calls and have a friend coming over within the hour to help me move a couch out of the living room to make space for the hospital bed. Meanwhile at the hospital, they are giving Jim one last IV that should take a couple of hrs, while all the other arrangements get put together.

-----------------------

well it's 4:00pm. the sofa is in the garage, the hospital bed and O2 machine are in the house. The ambulance has come and gone.

And Jim is home! ;D

What an absolutely exhausting day. I'm both terribly scared and incredibly happy. Whee! the rollercoaster has been zooming along today. My back is starting to ache and I am dead-tired; but Jim is doing fairly well, and that's all that matters today. Tomorrow a nurse is supposed to stop by; and we have no appts. until Tues.

The dogz barked at Jim at first. As you can tell from the pictures of his first day in the hospital and his first day back home, he doesn't look much like they remember Jim. Nor does he smell too much like Jim with all that hospital odor around him. However, within about five minutes, he was letting them jump onto the bed with him, and tails were just a-wagging.

Hopefully, this is finally the turn-around point and things will actually begin to improve. Thank you for all your support for me while Jim was in the hospital! If things go well this weekend, I'll give us all a break from these updates and catch you back up at the first of next week.

[attachment deleted by admin]
leatherman (aka mIkIE)


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

Offline Snowangel

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Re: spinning wheels
« Reply #158 on: April 04, 2008, 06:47:59 PM »
Mikie,
What a crazy day!  That is great that the nurses got all you needed in line for you.  I am so happy for you and Jim and the dogs.  Just being home and surrounded by you and the dogs should do him a world of good.  Good Luck and Congratulations!
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 Assurbanipal

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Re: spinning wheels
« Reply #159 on: April 04, 2008, 10:27:01 PM »
Mikie

Congraulations to you and to Jim -- that's quite a "glad to be home" smile there.  No doubt there will be ups and downs over the next few days but I'm sure he feels GREAT to be out of the hospital.

Now make sure you take full advantage of the nurse and neighbors -- you've been through a lot too and need to take care of yourself.

Hugs
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline bear60

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Re: spinning wheels
« Reply #160 on: April 05, 2008, 04:46:19 PM »
Well....this is big news.  Now that JIm is home, are you the head cook and bottle washer?  Does he have an apetite yet?  So....whats for dinner?
Poz Bear Type in Philadelphia

Offline Ann

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Re: spinning wheels
« Reply #161 on: April 05, 2008, 07:37:15 PM »
Hi Mike,

I understand that your updates might be a little more sporadic now that you're in full time charge of Jim's care.... hang in there and know there are still people right round the world who are in your corner.

Please don't forget to take care of Mikie.

Hugs,
Ann
xxx
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline leatherman

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Re: spinning wheels
« Reply #162 on: April 05, 2008, 10:24:03 PM »
Jim's first night back home didn't go too badly.

Luckily our living room is big enough to accommodate our new sleeping arrangements. I had Jim all tucked into his bed and was able to pull out the sofa bed for myself, still leaving room to walk around and put a bedside table next to Jim.

However, Jim had other ideas. He began to cry as he told me how he had only managed to get through by hoping for the day when we would sleep in the same bed together again. Since I have no clue what the future holds, and since Jim had been through hell the last 8 weeks, who was I to deny him what he so desperately needed? Thankfully, moving him from one bed to the other went smoothly, especially with Jim really motivated to make the effort.

You'd think after such a grueling day yesterday, he would have been all tuckered out; but I wasn't so lucky. LOL He talked and cried until midnight, explaining what a horror the past 33 days and 2 hrs had been. The hours of loneliness, the sterility of human contact with the nurses being gloved and masked, the confusion of not only different nurses and doctor every day; but the daze and mental confusion caused by the meds, much less the simple sheer terror with the possibility of death so nearby.

The rest of the night was spent with Jim still living on hospital time. That meant that every hour and a half to two hours, I was awakened as he needed more pain meds, more water, more or less linens, or the urinal. And each time, he wanted to talk more. I don't think I even got 4 hrs of sleep last night and it sure wasn't 4 hrs of sleep uninterrupted. Hopefully, as Jim re-adjusts to being home, things will settle down in the next couple of days. Thankfully, even with the welfare and SS pending, we've been able to get some assistance. A nurse was by today, and another will be in on Mon - along with a home health aide, which will take some of the pressure off of me.

Now that JIm is home, are you the head cook and bottle washer?
I'm the Head Everything Washer ROFL the clothes washer has been my best friend today. ROFL I've done so many trips up and down the stairs that I've pulled a groin muscle. Ouch! I can think of much nicer ways to do that than lugging couches around, hauling laundry up and down the stairs, not to mention helping Jim stand and move to a chair a few times. He's really quite the invalid at this point. Lordy, when does that aide get here??  ;D

Does he have an apetite yet?  So....whats for dinner?
While I had some of my local mom's homemade chicken salad for lunch, Jim actually ate a small bowl of Frosted Flakes (without ANY "nagging" on my part!). Dinner was a small bowl of mashed taters for him, while I had ravioli (from a Akron italian grocery store - Jim has won over $300 from there working the last half year and getting the store credit as a prize for saleman of the month). Jim says he'll eat half a peanut butter sandwich in a bit - to start getting some protein into him.  ;)

hang in there and know there are still people right round the world who are in your corner.
Every free moment, and there aren't many LOL, when I finally get those breaks to just sit, I really do think about how many people from so many places and reached out to us in such a time of need. When this crisis has passed us, if any of you ever need help, love or support, I'll be your guy.  ;)

 :-*  mikie
« Last Edit: April 05, 2008, 10:26:59 PM by leatherman »
leatherman (aka mIkIE)


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

Offline Roie

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Re: spinning wheels
« Reply #163 on: April 06, 2008, 03:42:10 AM »


Please don't forget to take care of Mikie.

Hugs,
Ann
xxx


Remember this please.!!!!
Cruise on down the High Way

"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."
MtD

Offline BT65

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Re: spinning wheels
« Reply #164 on: April 06, 2008, 08:06:45 AM »
Mikie, if I ever get into a bad condition, please pm me your phone number. ;)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #165 on: April 06, 2008, 11:20:55 PM »
Just when I thought I would be updating you less as Jim struggled to recover, I find my writing another post as Jim has worsened. It seems like every time I'm expecting the situation to turn around and start improving, we take a step or two backwards.

Last night was similar to his first night back ("living on hospital time" and sleeping together on the fold-out, of which I only have about 5 inches of space last night), except I got an extra hour of sleep throughout the night.

Today, as we passed the 48 hour mark, I must say that I wish they had NOT released Jim from the hospital. I have spent much of Sunday snapping, cajoling, pressuring, pleading, yelling, crying and bitching at my honey. He doesn't want to eat, or move, or do anything to try to stay alive. Matter of fact, he's ready to go back to the hospital. I don't really know what he expects there as they never made him eat or even got him out of the bed the last three days he was there. I guess those nurses were just happy to keep him Dilaudid-ed up as he was then one less patient to actually care for.

I screamed at him and cursed at him this evening and told him how much I was doing to try to keep him alive, while he was doing absolutely nothing to help himself. (Maybe those low O2 levels affected his brain/mind) I told him that I would NOT take him back to the hospital today. Instead, I told him to decide if he wanted to live or die, so I knew what to tell the visiting nurse tomorrow and which doctors to call. He also needs to decide, if he chooses to finally give up, whether he wants to die in the hospital or at home.

I just cannot believe how ugly I had to be to him to try to get the point across, that's not the kind of man I am. I nearly got in the car and drove away this evening after yelling and crying at him again; but I am a better man than that. I told him that I'll never regret what I said to him today whether he lives or dies, because I know what I said was nothing but the truth, backed by love.

As much as I wanted Jim back home, I now wish he had never come home this weekend (moral to this story: be careful what you wish for). Looking back and re-reading my previous posts, I must say that these last three days have actually been the worst for me so far in this whole crisis. I'm so mad, so sad, so frustrated, so sleep deprived and so tired and exhausted that I can hardly bear it.

As my mother told me the other day, there's only so much YOU can do to help someone if they won't help themselves. (I guess that's nothing more than the discussion we have here sometimes about whether to take meds or not. It's a personal decision for personal reasons.) I guess I'm trying to talk myself into accepting the fact that I'm not going to be able to prevent Jim's death, since he obviously has no will to live.

I plan to tell the nurse tomorrow all about this weekend, right in front of Jim, and will call the docs in his presence also (I have been "discreet" a few times and talked to people - like all of you reading through these last terrible 36+ days - outside of Jim's presence about his condition). But it won't be MY decision to let him die; it will have to be HIS.
leatherman (aka mIkIE)


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

Offline BT65

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Re: spinning wheels
« Reply #166 on: April 07, 2008, 07:43:09 AM »
Mikie, I'm hoping you can get through this crisis with some degree of sanity.  Take care of yourself.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #167 on: April 07, 2008, 12:49:35 PM »
I was so glad this morning to recieve a call from the visiting nurse. She wanted to come over a little earlier today than originally planned. After telling her about the events that transpired over the weekend, and seeing Jim firsthand, she phoned the doctors and had an ambulance sent out to take Jim back to the hospital.

I'll be heading to the hospital in a few hours (after they take Jim in through ER) once they get him settled into a room. I'll update you all later tonight.
leatherman (aka mIkIE)


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

Offline Snowangel

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Re: spinning wheels
« Reply #168 on: April 07, 2008, 02:01:38 PM »
Sorry to hear Jim is going back to the hospital.  Good luck and try to keep your spirits up.
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 bear60

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Re: spinning wheels
« Reply #169 on: April 07, 2008, 02:18:15 PM »
Ok, this is for the best. I hope you get some rest, Mikie.
Poz Bear Type in Philadelphia

Offline JDPoz

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Re: spinning wheels
« Reply #170 on: April 07, 2008, 02:33:38 PM »
Oh Mikie, so sorry to hear it wasn't quite time for Jim to come home yet.  He just needs a bit more time in the hospital to get his strength back.  Please take good care of yourself.
Peace,
JD

Offline leatherman

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Re: spinning wheels
« Reply #171 on: April 08, 2008, 12:26:08 AM »
This must be the world's longest rollercoaster that I've been riding the last 36+ days. I know I probably keep saying this; but today was the worst day yet.

After things went so smoothly with the help of the visiting nurse for transporting Jim back to the hospital, things were terrible once he got to the hospital. Since we hadn't been able to contact his GP at first this morning by the time the ambulance arrived, Jim wasn't pre-admitted to the hospital but went in through ER. The nurse had discussed with me that it would take a few hours admitting him that way, so I should take some time (and go eat some homemade chicken noodle soup my Ohio mom had made for us) before going to the hospital and that by then he would be back in a room rather than ER.

However, when I arrived around 4pm, I found Jim still in ER - tucked away in a darkened corner behind a curtain of one of the ER rooms. After seeing no medical personnel for 45 mins, I went looking for answers. The ER nurse was first very guarded about saying anything to me until I whipped out the medical power of attorney so fast I nearly got a paper cut. However, the most I really got out of her was that Jim was "very ill". Well, no duh! That wasn't new news after spending 33 days with him in the hospital. Nearly 8 hrs after entering ER, Jim was finally moved to floor two (the surgerical recovery floor). Because Jim had gone home, his records had already gone to the medical records dpt, so no one had any idea about what his condition was. A rather pissy nurse and I played 20 questions as I filled her in on the details, and offered to go get his records myself, since it was taking so long to get them transferred back up to the floor. Then I found out that although Jim's GP had been notified about all this at 10am, there were no orders for Jim, so they weren't even giving him water. For Christ's sake! The guy obviously is on the edge of death and can't even get a cup of cold water in a hospital!

I drove back home (detouring for stuffed bell peppers for dinner thanks to the local mom) to get some of the more recent papers about Jim that I hadn't had time to include in my ever-growing folder, hoping to help the new nurses figure out who Jim was. While at home, I gathered back up all the toiletry supplies we had brought home from the hospital, along with several cups and bendy straws. If they weren't going to provide some basic necessities and care for Jim, then I would handle it myself.

I got back just in time to find Jim being transferred (once again) this time to floor 10 - a medical floor that looks to be a step-up from oncology and a step-down from CCU. But this was a good transfer! On the new floor two nurses and three aides quickly were attending to Jim's immediate needs (and actually had a partial copy of some of his records). I told them all about the last month, the horrible time in ER, and thanked them profusely as I was feeling better about the situation finally seeing someone actually caring for Jim after nothing was done for nearly 10 hours.

The most troubling events of the day were a few things that Jim said to me. When I first arrived in ER (in that cold dark corner of a room) he didn't know who I was and asked if I was there to sell him something. Later as they were transferring out of ER, he told the aide I was his business manager. Thankfully out of ER, he knew who I was again. But as I left to go home for dinner, paperwork and his personal belonging, he asked me to take him home too; he didn't remember being at home this weekend. Then before I left him tonight, he was quite frustrated and mad at me. He repeatedly asked why I was forcing him to stay there and what gave me the right to make decisions about his care.

Though not knowing who I was, was the most devastating blow; I can forgive his anger at me, as he has very few lucid moments right now. The Jim that I know isn't home right now and a new, very disturbed person has taken his place.

The nurses talk to me like I should know that he's dying, while the doctors keep telling me he could pull through. If I knew which way things were going, I could make a better decision and the troubles of this weekend might not have happened. I'm very mad at some of the doctors and plan on talking with them. Just not tomorrow morning, as I have to get some rest after only getting about 15 hrs of sleep through the last four days. I hope and pray that Jim makes it through the night.

mikie

PS it's midnight and I'm about to finally crash, when my phone rang with a call from Jim. The time he spoke about how he's dying and asked if I would come back. I tried to explain that he was getting good care and I had to get some sleep. His reply? "You've betrayed me, and left me here to die. Goodbye. click". I really don't like this person that has replaced Jim, so I'm just going to ignore his hateful words. I know what I've done has been right, and so do a myriad of nurses, doctors, and all our friends. I hope and pray that Jim makes it through the night and that "Jim" finally comes back to me.
leatherman (aka mIkIE)


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

Offline Queen Tokelove

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Re: spinning wheels
« Reply #172 on: April 08, 2008, 03:09:15 AM »
You poor thing, what an emotional roller coaster you're on. I feel for poor Jim too. I can only hope that things will get better for the both of you... :-*
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
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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
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Offline bear60

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Re: spinning wheels
« Reply #173 on: April 08, 2008, 08:03:09 AM »
You poor thing, what an emotional roller coaster you're on. I feel for poor Jim too. I can only hope that things will get better for the both of you... :-*
That about sums it up.  Best of luck with all this Mikie.
Poz Bear Type in Philadelphia

Offline Snowangel

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Re: spinning wheels
« Reply #174 on: April 08, 2008, 10:01:06 AM »
Mikie-I don't know what to say, I just hope things get better for both of you soon!
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

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Offline leatherman

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Re: spinning wheels
« Reply #175 on: April 08, 2008, 02:55:18 PM »
I hope not to jinx things, and I say this with reservations; but things seem to be a little better with Jim today.

After that midnight call from the "person who isn't Jim", my phone was ringing again at 630 this morning. This time it really was Jim on the other end (he called me "honey"). He wanted to know if I could come in and turn off the beeping IV machine. (why the ER put that long-ass IV needle in his arm rather than use his port is a mystery I'll never know the answer to) I told him to call the nurse; but he said he had already done that several times. (Jim seems to be very hard to get a pulse/ox on, and IVs, for some reason, tend to beep alot when they're run through a needle in his veins) When I told him to try straightening out his arm, the beeping stopped. I got a very heart-felt thank you from Jim and told him that I'd be seeing him soon.

Two hours later (since I was awakened so early, I was about ready to leave the house.), Jim called back and asked when I was coming to see him. He was very happy to hear that I would be there by 830. I was VERY happy to see upon my arrival that he had eaten all but 2 spoonfuls from a bowl of frosted flakes, and was again drinking the ensure. I was even more pleased to see nurses and aides frequently stopping by to check in on him. (I have made sure to thank them all, hopefully, that'll help keep the better care coming)

Not long after breakfast, Jim was scheduled to get another transfusion. As the nurse was about to move the IV to his other arm (hopefully to get that beeping to stop), I asked why no one was using the port. Duh! I guess all his records aren't back upstairs yet. Before long, the IV needle was out, the outer part of the port was inserted, and fresh blood was flowing into him - with no beeping.

This hospital runs their food service like room service, so you can call whenever you want to order. They called while I was there to tell Jim more ensure was being sent up (I took the call). When the worker told me that Jim was listed as "non-parcipatory", I agreed with that. Now a food tray is sent to him automatically along with ensure for each meal. I stayed through his lunch and kept prodding him (he's still very "dozy") and got him to eat all the meat and a few noodles from the beef tips and noodles (it didn't really look like that; but that's what the ticket said it was LOL) and half a roll. He was back to being my nice Jim and took my prodding without bitching. Before leaving for the afternoon, I promised him that I would be back at dinner to make sure he actually ate again.

While at the hospital, I also started my own crusade. EVERY single doctor, nurse, aide, etc that steps into Jim's room has to hear my tale of this past week. I believe that because of the hospital's room service food system, where the cafeteria also picks up the trays, that no one was actually tracking how little he had been eating. I even remember an incident last week when the worker picked up Jim's dinner tray (untouched) and joked about Jim not being too hungry or not liking the food that night. What really happened is that the nurses on the oncology floor had been keeping Jim so doped up (sometimes I witnessed them giving the Dilaudid injection just as a meal arrived) that he was starving to death under their "care" (and I use that word VERY loosely). That meant by the time he had come home to me, he didn't have any strength to even attempt eating, much less trying to "recover". And for good measure I also add the part about ER leaving him alone all those hours to die in that dark corner of a room.

We're still not out of the woods by a long shot; but Jim seems to be getting back to where he was about mid-week of last week - before he began to starve to death. I plan to change my visiting hours, so I can be there each meal (well, maybe not in time for breakfast LOL) to make sure that Jim keeps eating.

One last thing before I got park my butt on the couch and do NOTHING for a few hours. I saw a sign today that the chemo must still be doing it's thing in Jim's body. After helping him brush his teeth, I was helping an aide get Jim washed up and I noticed quite a bit of hair on his pillow and the linens. Thinking the good thoughts, I'm going to pack a ball cap to take with me today, so maybe soon, Jim will be like like some of those other chemo patients I saw - walking the hallways with their IV stands and with caps on to cover their bald heads.

Though MY head might not be going bald (no jokes from the peanut gallery!), my head feels a little better this afternoon.

PS I really am going to sit on the couch now; cause I had a few "chores" to take care of first on such a beautiful Spring day in Ohio. First, I had to clear up the "dog yard". Now that all the snow is gone, all that un-frozen poop from this Winter needs to be cleaned up. Of course, I had to take some time and take the dogz out into the "big backyard" (behind the pool) to play, roll in the grass and chase balls for a while. Finally, I took some time for myself, took off my shirt, and just sat up on the deck by the still-covered pool, soaking up some rays. The dream I've been holding to through all of this is that "some time" this summer, Jim and I will both be sitting up by the pool enjoying the Summer together.
leatherman (aka mIkIE)


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

Offline leatherman

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Re: spinning wheels
« Reply #176 on: April 09, 2008, 12:34:57 AM »
I continued on my tirade this afternoon, as Jim was once again not doing well. When I returned, I found the nurse bringing in a reheated tray of food for Jim - who was still lying there pretty much unconscious. Jim and I fought again about eating vs. dying and I did get him to eat 1/2 a chicken breast.

One of the cancer doctors came in, and I let loose the tirade against him. Looking back now, I will have to say something nice to him and one of the nurses, as their answers have begun to sink in. Don't get me wrong, I said the right things, and I had the right to be upset; but after stopping by my Ohio mom's house and breaking down (more about that later), and listening to her story, I think I'm finding some hope to still get through all of this.

Traumatic as this has been with Jim, this isn't all that "special" as there are probably thousands of other families going through the same thing today. After Randy was buried, I never looked at a funeral, with just a passing glance as I used to. Now, I always feel sympathy as I know someone there by that grave is as hurt and destroyed as I had been at Randy's funeral. My heart goes out to those people, whom I don't even know, sooo much. But maybe that's my problem. The other day, in one of his deliriums, Jim said I was acting like a "big girl". What can I say, that is who I am - a very sentimental, emotional guy (omigod! that must be "mikie" talking and not "leatherman"). But I don't apologize for being that way. I lost the love of my life when I was only 30 and I nearly died twice. I learned the hard way to appreciate life and the ones you love. You have to enjoy your life and appreciate your friends while you are alive; because none of us really knows what happens after that. If you blow it in this life and go around sulking, you just might have wasted it all.

So talking with the Ohio mom, I remembered what we went through when her husband was so gravely ill and nearly died. She begged him to eat and live; she argued about his care with the doctors and nurses; she lived day to day never knowing if she was about to become a widow or not. Even after over a month in one hospital and then being sent to a rehab hospital to recover (or, being brutally realistic and honestly, being sent there to pass away) for two more months, her husband pulled through and has been alive (though a diminished man now) for 5 years - and he had NO will to live. We (as I was by her side throughout that time in her life) received four phone calls throughout his first month in the hospital, hooked up to sooo many machines, to come quickly as he was dying. No one has called me to say that about Jim. Matter of fact, the cancer doctor did speak about starting an appetite inducer medication along with IV nutrients. I may have been a "big girl" today, crying and ranting, but I know that if they continue to used the Dilaudid and expect Jim to eat, that he will die. I had my medical POA out again today and put a stop to that, and I truly believe that is the correct solution to this current setback (see I have some hope now, I'm calling it a "setback").

Of course, Jim's situation is still dire and there may not be a recovery; Either way, it obviously means that this is a hard fight if it's going to won. (the cancer doctor also explained how much harder Jim's condition is to fight having AIDS and aids-related non-hodgkins lymphoma; but having treated several similar cases, he really did not feel it was time to give up yet) Several times during his lucid and delirious moments, Jim has said that he wanted to live, so tomorrow it's time for me to keep fighting for Jim as another strategy (the med and nutrients) is tried. I may have been emotional today; but I was still doing right.

Finally! I bet you thought I forget to tell you more about my break down tonight. You know me, my stories always come back around - eventually. LOL I guess what's troubling me the most personally (besides perhaps losing Jim) is that we keep being on this brink and I'm deadly afraid some day some one is going to force me to make "that" decision again. With Randy, and with every one of our 7 spaniels that have passed away since, I was the one called on to make that final decision. I know I've made the right choice (too!) many times now, but who I am to play God? Each choice has always a very somber and heavy burden for me to bear. I tell you, being a "good guy doing the right thing" is a hard responsibility.

I believe now that after the last few days, tonight I stumbled under the load I'm carrying - but I'm still throwing punches! (I know I mixed my metaphors but I'm upset and emotionally wrung out. That's my excuse and I stand by it) Tomorrow I'll be back, with either Jim or JimD (that "other" person he is sometimes), making sure he's eating (as I did tonight as I feed him myself, and constantly prodded him to wake up and finish chewing and take "just 1 more bite") or getting nutrients. With some luck (backed by your prayers and good thoughts), and some patience on my part (patience - a hard lesson to learned and boy have we been taught it through this situation!) hopefully for Jim's sake, things will finally begin to turn-around.

----------

It's midnight and I just returned from the hospital after a late night call from Jim (the real Jim, not that guy that called me last night). After talking to his nurse, we thought it would be best if I came in after hours to help calm him some. Just 1/3 through a bag of IV nutrients the change in Jim was very good to see. He had a million questions, like a man coming out of a dream. He even asked if he had been someone else lately. I told him that I called that guy JumD. His reply? "That guy isn't very nice is he?" No. That guy is a really bastard. Jim did remember being at home, but was fuzzy on what happened through this last day. I explained how I had fought to get him the proper care, how the doctors and nurses had listened, and that I thought we were already seeing a turn-around evidenced by how lucid he was. I filled him in on his treatments and what to expect tomorrow. I thought it was best to NOT tell him about the ER experience. Hopefully, he won't ever remember that at all, though it will be forever etched in my mind. We made a plan of when I would come back tomorrow morning and wrote it down. He then told me to go home and sleep, so I could hurry up and come back. On the way out I had another nice chat with his nurse (I still believe that the more people that understand the whole situation, the better care Jim will receive).

Nitey nite as I have to hit the hay, since I am "scheduled" for a 930 visit with my honey and I have to be ready to fight the good fight again.
leatherman (aka mIkIE)


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

Offline bear60

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Re: spinning wheels
« Reply #177 on: April 10, 2008, 08:14:46 AM »
Hi Mikie
I checked in to find out what was happening with you and see you did not post for Wednesday.  How did things go ?

Joel
Poz Bear Type in Philadelphia

Offline leatherman

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Re: spinning wheels
« Reply #178 on: April 10, 2008, 09:29:39 PM »
I didn't post yesterday because I was just too confused about what to do to help Jim and was emotionally distraught and wrung-out.

For the first part of the day, Jim was doing okay; but as the day wore on, he became disorientated and confused again. He even refused to let the nurse re-attach the TPN (iv nutrients) after the blood transfusion was done. I went back in the evening, and Jim was semi-lucid and demanding to go home - regardless of what that meant. So we had a serious talk. I explained to him that in his lucid times, he stated he wanted to try treatment and try to stay alive. I explained that if he really did feel differently (and if it had been me in the hospital 37 of the last 39 days, I can't say that I wouldn't be ready to give up too) , then he had to tell that directly to the doctors.

So this morning I was back up early and in to talk with the doctors. ALL of the doctors believe that he can pull through - maybe of fact, after finding on the latest cat scan that the tumors have grown slightly larger, a second full round of chemo is being scheduled in a few days because his numbers are all close enough to normal. Also arrangements are being made to send Jim to a rehab facility, in a few days after chemo, for perhaps 2-3 weeks to recover before coming home.

I had a long talk this morning with Jim's GP about" Jim", "unconscious Jim", "depressed Jim", and "JimD". She says that sometimes cancer patients go through this kind of situation because of the meds, their illness, and just being in a hospital for so long. She had a psychiatrist come in and speak with Jim, and then with me. The plan now is to give Jim a mood elevator that should begin to take effect within a day and also anti-depressants to continue to help this situation.

It's no wonder the poor guy has been so confused through all this. Tonight they moved him again! and back to floor 8 (oncology - where they let him starve!!). However, he's back on the other end of the floor, where I thought the nurses were much nicer and better. Just before I left, as we could see a spectacular Spring sunset through the windows, he asked (and he has such a tough time talking now) whether that was the room and bed he was going to be staying in for the night. (poor guy! never the same nurses, or doctors, or rooms or even beds.) Tonight was student nurse night, so as I was leaving (early for a change) a "horde" was descending on him to give him meds, change the iv fluids, wash him up, and get him what he needed to get through the night. Hopefully, a new sleeping med will help out too. (I warned him about those 1am and 3am calls LOL) Although I would have liked to have seen some improvement in Jim tonight, at least he was just "confused Jim" and not one of those other bad personalities.

I can't tell you at all that Jim is doing much better; but I can tell you that his condition has been stable, and things are being done to correct the problems he is having.

After several days of bouncing up and down, I'm completely crazed and worn-out. I was all ready to accept the inevitable this morning; but none of the doctors believe the situation is that drastic (as I said the cancer doc believes chemo is a viable treatment in two more days).

After talking things over last night with my mom-in-law (a nurse) to determine what I needed to say to the doctors this morning and what I needed to find out from them, and after talking to my local mom today (who echoed what my own mom has said in the last few times), I've decided to take a different approach to Jim. Until his personality is back to normal, I can't let him keep cracking the emotional whip over me, and go rushing to the hospital every time he's upset.

I feel bad about having to take this tactic, but I have to save my own sanity (and health) and get some sleep (nearly every 3 hours for the last 5 days, I've either been doing something for Jim, or answering one of his crazed phone calls). I still feel deeply obligated though to keep a very close eye on the situation though - they did almost let Jim starve to death, so I can't completely trust them at the hospital.

Oh, and in two weeks, we'll find out how much of a toll this has taken on my health. On the way in tonight, to make sure Jim ate something at dinner time (about 10 small forks of pasta with meat sauce. that amount was better than nothing, and he does have iv nutrients still going), I stopped by the lab and had my own blood work done. Hopefully my counts won't be too far in the tank (I did "try" to take my meds, but I'll admit I wasn't very good at doing that for a lot of this past month). I hope the doc won't razz me too much either; but, with some luck, if Jim really is in rehab two weeks from now, I bet the doc will give me some grief. LOL
leatherman (aka mIkIE)


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

Offline AlanBama

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Re: spinning wheels
« Reply #179 on: April 10, 2008, 10:36:27 PM »
Hang in there honey.   I know how tough this is for you.   I think you are doing a fantastic job of being a supportive and loving partner to your man.

As always, keeping you in my 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 BT65

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Re: spinning wheels
« Reply #180 on: April 10, 2008, 11:10:58 PM »
Thinking of you and Jim.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Longislander

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Re: spinning wheels
« Reply #181 on: April 10, 2008, 11:48:01 PM »
Still here Mike, and praying for you both.  Hang in there~

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 heartforyou

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Re: spinning wheels
« Reply #182 on: April 11, 2008, 04:15:47 AM »
Mike and Jim,

I just lit a candle for both of you.
I have just read the whole thread... and it has moved me thoroughly to know the terrible situation you are in.

If there is a God, let him have mercy on both of you and help Jim through.

But I want to send you tons of good energy and courage, because one tends to forget that you,Mikie, are suffering even so.
Know that I keep you both in my thoughts in tiny little Belgium.

Love

Hermie
« Last Edit: April 11, 2008, 04:31:18 AM by heartforyou »
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline bear60

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Re: spinning wheels
« Reply #183 on: April 11, 2008, 08:16:22 AM »
"After talking things over last night with my mom-in-law (a nurse) to determine what I needed to say to the doctors this morning and what I needed to find out from them, and after talking to my local mom today (who echoed what my own mom has said in the last few times), I've decided to take a different approach to Jim. Until his personality is back to normal, I can't let him keep cracking the emotional whip over me, and go rushing to the hospital every time he's upset." quote Mikie
............................
This makes a whole lot of sense for you, Mikie.  I was beginning to worry that you were going to crack under the strain of all that up and down.  I know that when Kurt was in the hospital, I limited visiting to two hours a day after work. Of course this is a much more serious situation, but you are wise to set some parameters, or schedule, so YOU wont be worn out.
Good luck and keep us posted.
Poz Bear Type in Philadelphia

Offline leatherman

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Re: spinning wheels
« Reply #184 on: April 11, 2008, 02:49:07 PM »
I was beginning to worry that you were going to crack under the strain of all that up and down.
too late ROFL ;D

I know that when Kurt was in the hospital, I limited visiting to two hours a day after work. Of course this is a much more serious situation, but you are wise to set some parameters, or schedule, so YOU wont be worn out.
when Randy was in the hospital, I was working back then. I stopped by on the way to and the way from work for an hour. I haven't had "the job" as an excuse this time.

but as you'll see from my next post, I've been listening and thinking to all the adivce I can get. I've been considering this situation, starting to make some changes, and about ready to get more info about to handle this kind of situation.


As I've said several times, I do so appreciate the love and support I'm receiving from so many people. I originally came to this site because I felt like the onliest sick guy left. What I found was that others had gone through many of the same experiences (and some were even worse than mine) and lived to tell about them too. I found real people who understood the toll that living with this disease can take on you physically, mentally and emotionally. I found out I wasn't alone...

...and I found comfort, concern, and support.
thank you all

 :-* mikie
(who probably could use some anti-depressants himself  ::) )
leatherman (aka mIkIE)


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

Offline leatherman

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a harder experience?
« Reply #185 on: April 11, 2008, 02:51:19 PM »
After realizing I had just "lost" a week out of MY life, my brain is running full gear. I had to jot down a slew of thoughts to make some sense of what to tell you. So, sorry for all the (parentheses) LOL


update on Jim
Technically, Jim's condition is better than just stable (not in the medical sense, but as in how I perceive his condition), as several doctors reported more of Jim's internal organ functions returning to normal. I can't see much change from yesterday, except he was more asleep today, rather than unconscious or semi-conscious. Thankfully, I think he's finally getting some real rest. When he is awake, he's having a much harder time talking right now (dry mouth problem) and still having a little bit of confusion. (they moved him to yet another bed!! It's in the same room thank goodness; but they moved him to the other bed in the room which has an air mattress, to help prevent bed sores from forming) He had at first told the nurse he was going home today, and then told me that "I" was getting chemo today.( Not! After living through these last 40 days, YIKES I think I'll pass on ever taking chemo!) I helped the nurse wash and change him this morning, talked a little bit, and ordered his breakfast (which he didn't eat because of falling asleep) before leaving. He called me around 1 to just chat. He was able to tell me he was still waiting for the chemo treatment. He didn't beg me to come in though; instead he asked if I was going to be coming by at supper-time.


a harder experience?
I'm really going to have to go re-read some of Louis' posts and others here (sounds like I should go read through more of your posts too, Joel). Since I've only experienced a similar, yet different situation, and having listened to my Ohio mom's advice and really tried to remember her situation, I'm finding I need to look toward their stories and advice on how to proceed down this hard road.

Randy only had a 9-day hospital stay and just very weak until the last month of his life. Afterwards, I (at 30) was shocked and comforted to be able to share the kind of experiences I had then with my grandmother (80 at that time. I have always thought of this kind of thing as another bit of fallout from having aids. I am as sick as and can relate to people's conditions who are much older than I am. Maybe I should go read around in some senior's sites to really get a perspective on the life I've lived from 35-45. LOL but back to my grandmother...) who had around the same time lost her husband to Alzheimer's. For both of our men, they faded away (Randy in 18 months, my grandfather over 4 or 5 yrs), and the end was expected.

Right now I have more in common with my Ohio mom (67 - at least I'm finally relating to someone a little closer to my own age of 46 LOL) as her husband had a life-threatening crisis for 3 months. This experience is vastly different from my previous experience with Randy. Having lived through losing one partner, I really do know that life goes on. And that's part of the problem right now. Life is still going on - and I've got to get some of my life going again. I have to reconcile myself to NOT being by Jim's side constantly. In "losing" this last week, I put off earning some $$$ (more webcam work for a previous boss. It won't be all that much ($300 maybe) but it'll sure pay for some of that $3.45 a gal gas I'm burning up going to the hospital. Plus I do need to keep the roof over our heads for when Jim does get home), the house is getting all cluttered again, I didn't get any paperwork completed, and (selfish though it is) I didn't get outside to do any Spring yard work yet.

So today, I'm trying to make some changes. I started the day by taking my morning meds, visited Jim from 9-11, talked to him at 1, and called up the medical supply place to pick up the bed, and 02 condenser tomorrow. (I'm trying to think positively, that "when" Jim returns after rehab in several more weeks, we won't need those items) I won't return to the hospital until 5. Dinner is 7-730 tonight at my Ohio mom's house (where I'll take my nightly meds).

If you know me at all by now, you know I'll still be worrying about it all. I can't help it. As I've discussed with people before, even with all the crises and deaths that have been in my life, I'm not a pessimist. Most of my thoughts are about how things will go WHEN they work out, even if that takes longer than I'd like - a truly optimistic view. However, as a realistic person , I know that sometimes things don't work out nicely (my heart has already been broken learning the lesson with Randy).

In many ways Jim's crisis has been a much harder situation to get through than Randy's. I just keep telling myself that the chances are high of the outcome being better this time. Unfortunately, death trumps everything, and losing Randy truly was the worst thing to happen in my life. The doctors tell me that Jim shouldn't die, and I'll just have to trust their word.

mikie
leatherman (aka mIkIE)


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

Offline bear60

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Re: spinning wheels
« Reply #186 on: April 12, 2008, 03:12:02 PM »
Hi
I just wanted to check in today and see how things are going.  You seem a bit calmer in your last post, so i hope you are doing better.  I know  that you need reassurance from the doctors that things will get better.  I am glad that you have your Moms to help you.  That must be a great relief for you too.
Poz Bear Type in Philadelphia

Offline leatherman

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finally! a good day!
« Reply #187 on: April 12, 2008, 11:12:07 PM »
My phone ringing (w/ Jim's ringtone, a Pet Shop Boy tune) at 7:15 woke me up this morning. I was surprised that Jim would be calling. To be honest, when I left the hospital last night, things hadn't looked very good. I know the doctors kept telling me that he was getting better; but as he laid there sleeping when I left last night, so ill that he had barely been able to talk to me, he looked worse that death warmed-over. To my eye, he looked like and reminded me of nothing more than Randy during his final few days.

Expecting him to still be in a "stable" condition, and to hear his mumbled voice, imagine my astonishment when I heard how clearly he was speaking. The more he spoke, the faster I woke up, as I realized something wonderful had happened. When he asked when I would be in to see him (I had already jumped out of the bed by then), and I said probably not until 930, he told me to "get my ass outta bed" and come see him soon because he felt much better.

Before an hour had gone by, I was entering his room. Tears threathened to flow, as I saw him not only sitting up in bed; but happily chatting with his nurses. The change in Jim was remarkable! It's no exaggeration to say that he is 1000% better than he had been just 12 hrs. previously.

(Don't get me wrong. I totally understand that we're not out of the woods by a long stretch yet; but I needed something to pin my hopes on. I needed to see some visible improvement in his condition.)

I really got to "visit" with Jim throughout the morning, watching him eat not only some breakfast; but some lunch too (I had a third of his chicken pot pie, he had the other third; we had both had enough and left the last third LOL). During that time we talked about the things that had actually been happening vs the things Jim had perceived through most of the last week. Much of Jim's "reality" was mixed up between overheard conservations going on in the hospital, and with whatever was playing on the TVs loud enough for him to hear, along with the true reality of what had been happening to him (the multiple rooms changes, so many different nurses, and doctors coming in at all hours) His confusion (and the underlying depression) are getting better as times goes by.

Late this afternoon, I took "our" Ohio mom along to the hospital with me (she "bribed" me by offering reuben sandwiches at her house afterwards LOL). Jim was still up and doing well, so we stayed nearly an hour chatting and watching the ten-billionth re-run of The Lord of the Rings (which one doesn't matter. I can quote them all. LOL) Dinner for Jim was all the meat in the beef tips and noodles (and that's what it really looked like this time LOL) and some popsickles.

After the reubens and only one hand of euchre (and for a while I felt the old mikie again - mainly because I won! LOL), I made one last run by the hospital about 830. Earlier Jim had been hinting about asking me to stay the night, but he was just too sleepy already (and crabby from being tired), and I wanted to get home so I could spend just one night NOT worrying so damn much.

My whole day has been so much brighter (even if it did rain off and on all day). Who would think that just having your partner not all talk "crazy talk", much less just be able to talk at all, would be such a great thing. Hmm, next time you wish your partner would just shut up, you better consider the ramifications before making that wish. ROFL
leatherman (aka mIkIE)


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

Offline JDPoz

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Re: spinning wheels
« Reply #188 on: April 12, 2008, 11:18:23 PM »
Mikie, so glad to hear the good news!  Here's hoping there's some momentum building in Jim's recovery.  Please take care good care of yourself too!
JD

Offline leatherman

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Re: spinning wheels
« Reply #189 on: April 12, 2008, 11:48:32 PM »
this post isn't an update about Jim. it's just some random musing I had today thinking about the past, the present, and the people we've met in the hospital.


Helping me not worry so much about Jim' mental condition is that tonight we've played the "I know what you thinking" game. See I've been lucky to have a very good connection to the two men in my life. I guess the best word for it is "simpatico". Many times we can finish one another's sentences, or bring up the same subject the other one was about to discuss. If you tell one of us something, then expect the other one to know that same thing next time you met. Randy took it in stride; while Jim is constantly amazed by it. I just think that's the way love is.

Tonight, once again walking the hallways of the hospital, I began to think about all the people who stop to chat with me or say hi. Well, after spending 39 of the last 41 days there, Jim and I have both met or passed all the hospital staff on numerous occasions. (Jim meets them as he is transfer ed around from room to room, or going to the labs for any one of those scans that they have done on him.) Some of the staff even knew me before all this, as I get my bloodwork done in their lab on the average of every other month. (If my counts would only hold stable, I wouldn't have to have those vampires at me so damned often. LOL)

In thinking about all those people, I realized that Jim and I had both been flirted with! When my Ohio mom and I stopped in tonight, Jim was chatting with an aide (male) I hadn't seen before. My "mom" knew him though - he had been an aide over in another wing two years ago when she had both her knees replaced. Talk about a small world (well, this is a small city after all). Come to find out, this aide also knows several people that we know too. And it didn't come as ANY surprise to find out that his name is Mike. That's about the 15th one we know, counting myself. ROFL

After the aide left, I teased Jim about flirting with the guy. Jim read my mind though, and said what I really was thinking - that the aide had been flirting WITH Jim! Now that the subject was started I mentioned to Jim that I thought a transporter (one the crew that moves the people around to their scans and rooms) had been flirting WITH me the other day. Jim blurted out, "oh, you mean Glenn? from down in ER?" What?!?!? I thought Jim was all unconscious and stuff down in the ER. LOL (Hmm. So Glenn is the name of that hottie cruising "leatherman" while "mikie" waited for Jim to finally get out of ER and into a room.)

But enough about the boys, and back to our celebrity status in the hospital (having my picture on the front page of the paper last month sure didn't hurt any LOL). For whatever problems we've had with Jim's care, this hospital is staffed by a huge amount of very kind people. Nurses, aides, and transporters all frequently visit Jim (even coming from other floors) to see how things are going. I'm sure to be waylaid at least twice coming and going thru the halls (and even in the parking deck) by others asking about Jim, and how I am doing too. They ALL seem to know about our dogz, Pooltag and my muffins. ROFL

The other thing they all know is that we're gay. I'm old enough to remember when people would not have been so "nice" to us because of that. I remember a few incidents where I was seen as an "outsider" in Randy's case (back in the early 90s) because we were not "family".

See, I've always fought the "stigma" issue, not in marches like my aunt has done, but by being know as that nice "gay" guy. At my old house, I know all the neighbors refered to me as the "nice gay guy with all the floors at that corner house". (if they only knew how "bad" leatherman was though, they'd probably call me something different. LOL) Now, I've been kinda tickled to overhear some of the staff refer to us as that nice "gay" couple. Not once has us not officially being "family" been a problem. (We've even been caught smooching a few times by nurses and doctors.) Matter-of-fact, many of the staff have gone out of their way to get me a place to sleep or allowed me into the various scan rooms. It's nice to see that even in small town conservative USA, some of the stigma has diminished over the years. (even if the ID doc and cancer docs do glance furtively around before whispering "hiv" during their daily visits. LOL)

sleeping a little easier tonite,
mikie
leatherman (aka mIkIE)


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

Offline leatherman

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Re: spinning wheels
« Reply #190 on: April 13, 2008, 09:45:41 AM »
well, I guess I let my spirits get too high, and now I guess I'm going back to my original game plan.

Last night after leaving the hospital, I was surprised to receive two phone calls from Jim. It seems he had been talking to the aide about Pooltag and had some new ideas. I was very buoyed to hear that - that means he actually contemplating living until that pool party we hold on his bday at the end of July.

However, during the middle of the night, I received four phone calls from "crazy Jim". He was fairly mellow and subdued but wondered what was happening next, where were he clothes so he could go home, when was I coming to visit, and then tried to tell me the doctor said this morning that he would probably be released to go home on Monday.

Needless to say, I didn't get the good night's sleep worrying less about Jim last night after all.
leatherman (aka mIkIE)


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

Offline Snowangel

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Re: spinning wheels
« Reply #191 on: April 13, 2008, 12:37:25 PM »
Mikie, I just realized the avatar you have is perfect for the situation you are in. Everyday seems to be a rollercoaster ride and you are doing well with the ups and downs.  I am glad you and Jim have been getting treated well at the hospital.  It really sucks that in this day and age that you are gay comes into the equation, not that I know you personally, but from your posts you sound kind-hearted and caring AND you make them muffins, so how could they not love you both.  Thanks again for sharing.
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 #192 on: April 13, 2008, 02:55:07 PM »
I was only at the hospital a short time this morning because things weren't too bad (even after those late night calls). Jim's nurse and I discussed what was happening and she gave me a new term to google up: "hospital psychosis" (cognitive problems developing from a hospital stay). Now more of what's happening makes sense - and causes me less worry too. (it also points out where I think doctors fail us - by never "treating" the emotional issues that go along with a medical issue. think about all the posts here about testing counseling that isn't done. That's the same problem) Understanding that term ("hospital psychosis") and remembering what my mom-in-law told me the other day about hospitals having to do more paperwork on a patient who has been in for over 30 days, I now understand why they sent Jim home last weekend. They were hoping to help, not only themselves to less federal regs and paperwork, but to also help Jim's mental state.

Thankfully this psychosis is a temporary condition said to clear up within two weeks of returning home to familiar sights and routines - and without all the lights, and bells and whistles going on in a hospital.

I'm busy baking some muffins today for the nurses (I finally got to use the new muffin pans I got for my bday, ages and ages ago it seems), and tonight I'm putting Jim's phone on the charger before I leave. (the outlet is on the far wall, so I know he won't be able to get to it in the middle of the night. leatherman snickers evilly LOL Thanks to all who suggested this solution!! I thank you and my sanity thanks you!) I NEED some sleep and I have a couple of days of work that I can do this week, and we sure do need a cash infusion.

It really sucks that in this day and age that you are gay comes into the equation, not that I know you personally, but from your posts you sound kind-hearted and caring AND you make them muffins, so how could they not love you both.

As I told my local mom a few weeks ago, as gay guy I don't want to be treated differently; but I do still want to be considered "special". Although I may just be another human being on this planet, I'm also in a minority. I live in a world where everything is geared to a hetero viewpoint (even my new favorite channel LOGO has ads with the "breeders" kissing away). But just like that 80-ish year old couple in the hospital a few weeks ago, I love and care about my man and should be "allowed" to express that. It's no different for that older lady kissing her husband and caring for his needs, as it is with Jim and I - it's just "special" cause it's two guys.

It's been pleasantly surprising (now in 2008) how accepting everyone has been to us in this Catholic Hospital. But how can they do otherwises after seeing what a nice "gay" couple we are and seeing how much I dote and care for Jim. I know I've changed other homophomic minds by first being known as a "nice" guy before they find out about my orientation. I like to think my love and support to Jim now is also changing more minds.

and feeding them muffins sure doesn't hurt. ROFL

mikie
leatherman (aka mIkIE)


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

Offline rondrond

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Re: spinning wheels
« Reply #193 on: April 14, 2008, 07:11:43 AM »
--I screamed at him and cursed at him this evening and told him how much I was doing to try to keep him alive, while he was doing absolutely nothing to help himself. (Maybe those low O2 levels affected his brain/mind) I told him that I would NOT take him back to the hospital today. Instead, I told him to decide if he wanted to live or die, so I knew what to tell the visiting nurse tomorrow and which doctors to call. He also needs to decide, if he chooses to finally give up, whether he wants to die in the hospital or at home.--
--I just cannot believe how ugly I had to be to him--


Mikie,
I just found this thread and started reading and got pulled into a past life that I thought I nailed the door good and tight....you are doing exactly what needs to be done for Jim and for yourself. (Though recognizing it is the rub) When Chuck was just lying in bed and refused to eat I 'crossed over' into becoming someone I was not, but needed to be to get things done. When I finally broke down into 'ugly' and forced him to the hospital, I was in such a state that the doctors and nurses were more concerned about me than Chuck.
I'm new here, but please acknowledge Betty, Bear60,  Ann who remind you to take of yourself. You are doing what must be done.
Keep on.
ronnie
"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 leatherman

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Re: spinning wheels
« Reply #194 on: April 14, 2008, 10:34:18 PM »
Ack! The phone-trick almost worked. Someone slipped up in the middle of the night though and my phone was ringing at 4, then 530, then 6. I've since talked to the nurses and now there's a note in Jim's chart to tell him that his phone "isn't charged up and is still charging" if he asks for it again in the middle of the night.

I re-scheduled his SS appt. (again), put in a couple hrs of work myself (where Jim used to work too, so most of my time was spent catching everyone up instead of working on their webcams LOL), scheduled pickup of the hospital bed and O2 condenser for in the morning, and made short visits to the hospital at breakfast and lunch. I'll make one more short visit today but that'll be later tonight (so I can put his phone on the charger again), and with a little luck (and help from the nurses) get to sleep in a bit since I'll need to be home in the am for that pickup.

Jim was still doing alright. Although he's been shedding quite a bit (chemo will do that), you won't know it as long as you didn't check his hairbrush or pillow case.

As for myself, I could use some more sleep (maybe, just maybe, tonight!); but have been doing fairly well. I've been eating right for a while and my stress-induced intestinal problems seem to have cleared up. I've also been a VERY good boy, and have taken ALL of my meds since the day of my last blood work. If I can keep that up, then maybe the doc won't fuss at me too much next thurs day when I see him, not at the hospital for a change; but in his office.

----------

I'm not so certain if I'm going to get that good night's rest or not. When I stopped back by the hospital tonight, things were not going so well. Jim was totally misunderstanding about physical therapy and rehab and is under a firm belief that if I only bring the walker back to the hospital he'll be able to get out of the hospital. I tried to make things better by bringing back some of his own clothes, the slew of get-well cards he has received, along with a list of things he can do to get out sooner (eat as much as possible, do the bed exercises, sit up in bed, sit in the chair, etc); but I don't think it helped too much. Jim was in quite a mood.

First he couldn't get past some of his confusion and was very frustrated. Then started on the tack that "I" couldn't even do one thing right for him (I didn't bring the walker in - personally, I was afraid that in his "condition" he might try to use it in the middle of the night!). Unfortunately, I let my own frustrations (and lack of sleep) get the best of me, and told him in no uncertain terms to NEVER fault me after all that I had done for him over the last two months. (I'll be SOOOO happy to get the real Jim back!)

Secondly the hospital has gotten quite full in the last few days, and a patient was moved into the other bed in Jim's room tonight (a 92 yr old man). Jim's paranoia meter was shooting off the scale tonight! He was back to being close-eyed, teeth-clenched, and begging to be taken home. I did hide his phone in the bedside stand and talked with his nurse; but relented and told her she could call if Jim got "out of hand" during the night. (God, please let the sleeping pill work really good tonight!)
leatherman (aka mIkIE)


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

Offline bear60

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Re: spinning wheels
« Reply #195 on: April 15, 2008, 03:32:58 PM »
Hi Mikie
I hope you got a decent nights sleep and are going to try to take it easy today!
Joel
Poz Bear Type in Philadelphia

Offline leatherman

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Re: spinning wheels
« Reply #196 on: April 15, 2008, 09:39:15 PM »
I just found this thread and started reading and got pulled into a past life that I thought I nailed the door good and tight
Gosh, I am so sorry this brought back disturbing memories. I was hoping to lock them up myself after this is all over; but just as the grief of losing my Randy has only faded and is always there lurking, I guess I'll be saddled with these nightmare-inducing memories too.

But that's too far in the future to worry about yet.
See? I'm listening. One day at a time. ;)

you are doing exactly what needs to be done for Jim and for yourself. (Though recognizing it is the rub) When Chuck was just lying in bed and refused to eat I 'crossed over' into becoming someone I was not, but needed to be to get things done. When I finally broke down into 'ugly' and forced him to the hospital, I was in such a state that the doctors and nurses were more concerned about me than Chuck.
yes, I've been wondering if I won't need therapy or to be medicated when all is said and done. I've got no time - or energy left - for that sort of thing right now. LOL

As I said, I don't regret a thing I've done or a word I said to Jim in the bad times during this crisis; but that still doesn't make me feel much better for having had to become such a "mean" person to get done what needed to be done. I can't say I was terribly happy even to see all the looks the docs and nurses were throwing me the day I was on my "tirade" (the "quick, call security. this guy is crazy" look); but Jim and I have been there enough that I hope they know the "real" me. At least my rant got things turned-around and going in the right direction for Jim, so I can't feel too guilty about that either.

Once again, I found myself thinking of "others" who have been through this kind of situation. How did they manage to survive it? Did they survive it at all? I've managed to muddle my way through a lot of crap that's happened to me in my life, I'm sure I'll find my way through this too - in time.I just hope that Jim is able to come to grips with what has happened and isn't too "changed" when it's over. Of course, this kind of experience does change a person no matter what, but I'm hoping Jim's change won't be towards the bad. I know my own close calls with death changed my outlook. For a few years, I didn't even consider plans over three months in the future (If I felt well that day, I figured 3 months would be the time to get sick, get pneumonia, and that would be the end). As time went by though, I have gotten to a point where thinking about next Summer or next Christmas is definitely an option in my planning. I also learned to appreciate every day as much as I can. As I probably said last month, I'm very happy to have turned 46. That's something I could have never imagined lying in a hospital bed myself 9 years and 1 month ago.
leatherman (aka mIkIE)


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

Offline leatherman

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Re: spinning wheels
« Reply #197 on: April 15, 2008, 09:44:08 PM »
Yeah! I got a whole un-interrupted night of sleep. And thank goodness because today was a busy one for me.

Jim's cell phone was still off this morning and went to voicemail, and no one was answering the hospital bedside phone. After the guys came and picked up the medical equipment from the house, and I got to the hospital, I found out why. They had moved Jim again!

Because Jim had gotten that new "roommate" last night, his paranoia had kicked into high gear, and the nurses told me he had regressed to that nearly catatonic state again. Around 2am, they transferred him to the 5th floor (pediatrics/adults) and into a private room. Since the whole floor had started off as peds, there was carpet in the hallways, the most gorgeous wallpaper border (some Mediterranean seaside vistas), lots of primary colors (rather than hospital puke green) and the rooms seemed larger.

Jim was only slightly better in that room though. He was back to being very confused and frankly "demented". During the night, he had even attempted to get out of the bed (crashing to the floor) and now had a bed alarm in case he tried it again. In talking with another "new" set of nurses, and looking at his charts, I found that they had no information about Jim's mental condition. They thought he had always had those problems - and of course by their records they thought he was only a 9 day patient (what is this now? day 43 of 45, I think. I losing track it's been so damned long). When I explained that from Sept to Feb, Jim had been the top salesman at his dealership, they were quite surprised at the condition he was in now. (I told them to go chat with the 8th floor oncology nurses about "hospital psychosis")

Then I went to work for a few hours, where I probably spent most of my time updating Jim's old colleagues on his condition (he worked with this dealership for about 6 yrs, and I did their computer tech work for 4 yrs).

Stopping back by the hospital was really disheartening. Though Jim's physical condition wasn't worse (matter of fact his blood work is really coming around now; though after lying in a bed for 9 days straight this time around, he is quite weak as you can imagine), his mental problems were still very present. I took a look at the notes he had been making about changes to our patio and ideas for Pooltag floats. Although it's good that he's thinking into the future and making plans to still be alive when he turns 52 in July, I couldn't make head or tails out of what he had written or drawn. (only one phrase "personal debt" was legible, and I think that came from a frequent commercial running on the TV lately)

I had to explain that his back wasn't broken; his muscles just hadn't been used and weren't working right. I also explained that there wasn't fog in the room, the spiderwebs in his hand were actually his hairs which was coming out because of the chemo, and that the undulating unit under his air mattress was not two guys (Chuck and Larry I think he said) that were wiggling their fingers under his back. He said a lot of other really off-the-wall stuff, while he eyes were constantly darting around, to which I could only nod agreement and force a smile.

Although seeing Jim nearly dead of starvation last Monday was the worst, having a "crazy" boyfriend is no picnic in the park either. I'm endlessly answering his same repetitive questions about why is he there?, why can't he get out of bed?, what's the plan?, and why can't he go home?

HIV, non-hodgkins lymphoma, starvation, chemo, now (hopefully temporary) dementia. How much more can a person endure? I sure hope the docs are right and all this suffering that Jim is going through is worth it.

I really miss my Jim.

mikie  :'(
(who is turning off his own phone tonight)
leatherman (aka mIkIE)


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

Offline bear60

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Re: spinning wheels
« Reply #198 on: April 16, 2008, 01:47:50 PM »
Hey I am so glad you are getting some good sleep.  I know how hard it is to take take care of oneself under these circumstances.  Hang in there.
Poz Bear Type in Philadelphia

Offline AlanBama

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Re: spinning wheels
« Reply #199 on: April 16, 2008, 08:26:57 PM »
Hi Mikie,

Hope you are managing to take care of YOU during this horrible ordeal.  And honey, don't feel any remorse about drudging up bad or negative feelings that many of us may have experienced, even if it was years ago...sometimes we need to be reminded of how good we have it, if nothing else, to make us more thankful for it.

I know exactly what you mean about finding it difficult to plan very far into the future....to this day, I have problems doing this.   I think it comes from struggling with "short term" goals for so many years.....such as "just let me live until the next holiday"....or "now if I can just stay well through winter".
It's hard for me to imagine YEARS down the road from now, I guess because I have felt as if I (and others) were living on 'borrowed time' for quite awhile now.   I try to be more accepting of things, and look on the hopeful side, but always in the back of my mind, I'm running through the "worst case scenario".

Hang in there honey, and lean on your support system (the Moms and friends) when you need to.

hugs,
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

 


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