POZ Community Forums
Main Forums => Living With HIV => Topic started by: aztecan on July 19, 2006, 10:09:14 pm
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We all have those days when we wish we simply hadn't gotten out of bed. Well, today was mine.
I met a newly diagnosed person today. She is 18 and six months pregnant and, up until now, has had no prenatal care. Thank the powers that be New Mexico, the state in which I live, automatically tests all pregnant women when they see a OB/GYN. At least now she can receive services/help.
I visited someone else at a nursing home later in the day. The bad news is his KS lesions don't seem to be abating and he still cannot swallow anything solid. The good news is the feeding tube and round the clock feeding has helped him gain two pounds and today, for the first time in quite a while, he actually was able to move his legs by himself.
I then visited another person who is at home. He is having trouble eating and is down to about 75 pounds. I keep trying to encourage him, but today his mother again asked whether I think he will make it. All I could say was time will tell, but not to give up hope.
I then came home to a phone message from someone I hadn't heard from in a very long time. She said an old friend of mine died yesterday. My friend and I worked together almost 20 years ago. He had open heart surgery where they installed metal valves in his heart. You could hear them clicking if you stood next to him.
Apparently, when the surgery was done in the early 80s, he received a blood transfusion. About three months ago, he became very ill. He was hospitalized for most of the last three months. Turns out, when they gave him blood, they also gave him Hep C. Since he wasn't in a high-risk group, nobody thought to test for it.
He was a damn good reporter and writer. He also was an absolute nut and his wife is just as crazy and fun as he was.
There is no real point to all of this. It was just one of those days and I needed to vent. Thanks for reading.
HUGS,
Mark
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Mark,
And here I thought I was having one of "those" days. I am ashamed of myself for thinking woe is me today.
You are a special man to do what you do. I know it cant be easy sometimes but I know those people appreciate everything you do for them.
I am so sorry for the loss of your friend. Its always hard to lose a friend.
Hugs
Teresa
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Big Hugs Mark,
One of those days.
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god bless you Mark...
lisbeth
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We all have those days honey. I'm sorry for the loss of your friend.
You're a good guy Mark.....I know, just because you get to wear the white hat doesn't make it any easier, does it?
Hugs to you, my friend....
Alan
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I'm sorry for losing your friend. A Big Hug, Mark.
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Sorry to hear about your day Mark but I'm sure you made the day a little brighter by visiting the people who are not able to get out.
Doug
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Mark, to lay those people on your shoulders takes.... well ... amazing shoulders.
{{{Mark}}}
Here's to better days.
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Dear Mark,
I am often impressed by the things you do to help others. I once had a friend named Charlie, he was from North Carolina but we knew each other in L.A.. He was a regular guest in the AIDS ward of St. Mary's Medical Center. I used to sit in his room for hours reading books to him. He loved Canterbury Tales, but he was usually on a morphine drip and rarely heard a word of the story's.
The patients and staff on that floor outnumbered the populations of several towns I have lived in over the past 6 years. When I was a guest at that facility, a Nurse came to my room one day. She said she remembered me from all the times I came to visit Charlie and promised me the best possible care. I was there for most of that Summer and she kept that promise. It is people like you and that Nurse who make a real difference in our lives. Have the best day
Michael
(who loves "The Wife of Bath")
www.Commission-on-AIDS.org (http://www.Commission-on-AIDS.org)
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Sorry you had a bad day. that sucks. When I freaked out after my Dr Told me I was going to die soon after my diagnoses in 1984, I went to my shrink." How Long do I have?" I asked her. She looked me square in the eye. "Ole buddy, you can expect to live forever!". That really helped me at the time.
Sorry about your loss. you are a good man with a heart of gold. Better days are ahead my dear friend. Hugs to you!
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Mark,
Wow, what a day you've had!
You truly amaze me sometimes (ok, more than just sometimes!) You have such a big heart to reach out to all those people...BRAVO!
I am so sorry to hear about the loss of your friend.
((BIG HUGS))
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Mark,
Sorry to hear about that I always have the upmost respect for people who give their own time to help others. Hearing some of those stories certainly has a way of giving some perspective doesnt it.
Chris
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((((((Mark))))))
Ann
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Hey Mark
What a day indeed. I know of no one else here in my area that even has hiv (or at least they dont tell anyone).
And the few I do know back out in san diego are doing very well on meds.
I always ask too many questions or want to know more. I was wondering if this fellow with KS is on meds, if so how long, and if they are helping?
The reason I ask, my few KS spots all but vanished once my tcells got back above 200.
Your a good friend for them no doubt, and thats what they probably need most.
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Mark,
Bless you. I am so looking forward to meeting you in Montreal. You, my friend are "high quality" people.
Love
J
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Dear Mark,
As "those days" go, that one ranks right up there!
In case you didn't get any feedback from those you helped yesterday, let me attempt to let you know what you meant to them. One year ago, I was in the hospital with 3 t-cells and a nasty case of PCP. My hubby visited daily (well, almost daily), and I got one visit from a very dear friend, who years earlier threatened that if I ever went back into the hospital and didn't tell her, she would come in and personally shut off my oxygen. I didn't tell her, but my hubby did, and I am still breathing!
But the visitor who meant the most to me was the volunteer who came through twice a week (I was in for two) and offered a simple foot massage. We didn't really speak all that much (with PCP you want to keep the oxygen coming in, not going out), but I at least tried to say thank you every time. It is really odd, that a complete stranger (never saw him before or since) could have such a profound effect on me through such a simple task. But what it meant to me was that, even though this disease sucks, that hospital sucked, the food sucked, most of the nursing staff sucked, and the world sucked (watched the London bombing from my hospital bed), someone actually still cared. And that made it all suck a whole lot less.
And that, my brother, is what you did yesterday.
My other observation is this: I have seen way too many people die -- friends, lovers, acquaintances, tricks, clients, family members. Hell, I have knocked on death's door a few times myself. I like to believe that death no longer frightens me. But it is the one that you don't see coming that really gets you. Brings the whole thing home in a weird, kind of surreal way. But, as with all things, this too shall pass.
((((Mark)))) <--- Does that mean mad hugs? If not, I hereby change the meaning!!
Thanks for being you!
J. R.
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Mark:
I don't know how you do it, but I do know the world is a better place for you being here.
(((((HUGE HUGS)))))
RAB
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Mark,
I hope today's a better day for you.
David
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Dear Mark,
I am so sorry for your loss :'(
You really are such a great man.
VERY FEW AND FAR BETWEEN
Most of all, LOVE, to you my friend,
Kelly
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I tell you what Mark, the four corners is so very lucky to have you as a resident. I want you as MY case manager. I think you found your calling and of course, you are doing a bang up job at it.
I want to caution you a bit, not that you don't know already, but sometimes it bears repeating; please take care of yourself, and make sure you keep yourself grounded in this work. It is imperative that you keep the level of negative impulses to a minimum. I might suggest that when you have days like yesterday, that you take a minute or two to visit some of your more capable clients, and the positive energy you receive from them will help bolster you through the rough times. I know you use us for that, but sometimes being there makes all the difference in the world.
Good luck my friend, and keep up the good work that you do.
In Love and Support.
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What i missed most from the old forum was the possiblilities to have those little roses !!
Well, know that i am sending you a dozen of those roses :D :D
Siang
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Hey Mark, thanks so much for sharing. Sometimes it helps just to let the shit go and not hold onto it. And I hope you have found some small relief in having done that. I'm very sorry that you had this kind of day and especially for your loss/es. However, I'm so thankful that there are people out there like yourself whose unselfish acts of kindness, whether small or on a larger scale, impact the people you help in a way that is unmeasurable. Thanks so much for that. Keith
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Mark,
Wishing you many better days ahead! What a great Guy you are!! ;)
Mike
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And here I am wallowing in self pity about my job and money situations. Thanks for the reality check and wake up call Mark. This site and the people on it continue to amaze me. I am glad to even be remotely associated with all of you!
Andrew
(Still struggling to find my JK type catch phrase)
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Wow, thanks to all of you.
Every once in a while, I just have to blurt it all out and yesterday was one of those days.
To answer the question regarding the person with KS and meds, he has just begun a regimen. They are being administered IV, because he can't swallow anything solid. with the exception of the Valcytrin (I think that's what they call the pill form of Gancyclovir), which he gets down by first swishing and swallowing an anesthetizing rinse. This is a good thing, because there was a big hubbub about his receiving Cytovene because it has to be mixed daily and the nurses at the nursing home were terrified of administering it because it is cytotoxic. (I had a friend who administered it to himself. He used to hang the IV bag on his rear view mirror as he was driving down the road. I think the nurses were overreacting.)
I don't know the entire story, but there were medical reasons why he didn't start sooner. But, I have high hopes he will respond and the lesions will begin to ebb.
Yes Tim, I try to make sure I don't let negative energy - or those needing energy - sap me too much. I have taken great pleasure in my gardening this summer, but lately its just been too hot to do much unless its early morning or late evening.
This weekend though, there is an annual camp out at McPhee Reservoir near Delores, Colo. It's put on by the local coalition for equality and, from what I'm told, is a hoot.
I intend to go Saturday, after I finish with my harm reduction (read syringe exchange) duties. I haven't camped in the mountains in a while and this should be a fun time.
So, yes, I try to take care of myself. I even intend to introduce the group to the glories of scrambled tofu for breakfast. ;D
Again, thanks all of you. You really made my day.
HUGS,
Mark
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Mark all I can say is bless your heart... U seem like a remarkable person the type the whole world would greatly benefit from if we had more like U...
Thanks 4 fighting the good fight and being there not only 4 people in your own community but 4 those of us on here as well
BIG BIG HUGZ JASON
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Mark, dear....
You have so much compassion inside you, it just permeates the screen, no matter what you share with us.
I have often marveled at the amazingly consistent efforts you make toward your 'clients', and have known when you've been particularly drained.
Your steadfast nature is truly an inspiration, and I thank you for that.
I am so sad to hear about the loss of your friend. <<<HUGS>>> (I miss the roses, too, waterduck!)
With love,
Zeph :-*