Moffie65:
In October, I was into my doctor and left a urine sample, because my urine was cloudy some of the time. It was tested and found to not be a concern and he sent me on my way. I also called one of my friends here who works part time in a lab, and they told me that it wasn't unusual for proteins to show up in urine, especially for men.
As many of you know, I have been feeling pretty punk since that time, and have just dealt with it, by not paying attention to the cloudy golden elixer.
Two weeks ago, my sweetie and I came down with a stomach infection that was very much tied to a resturant here in town where we have eaten for years. Many people in town are also suffering this two week stint of horrible gas pains, vomiting and low grade fevers. It hit me really hard and further erupted my hole that lets my intestines come out through my hernia. After three operations, I have been told that my hernia is irreparible, and I should invest in a good brace. That is not going to happen, and if anyone is going to be pruchasing a brace, it will be the VA, because of the many mistakes they have made on my body in that region. Two of the operations were to repair bad surgical practices.
During this two weeks, I had surgery to remove one more candiloma on my anus, which is healing with the rapidity that one would expect with a 629 CD4 count and is causing me some discomfort, but not so much pain, at least comparred to my ongoing gastric discomfort.
Also, the six month timeframe came to a close on my wait to see urology at the VA, and so I went and found out that in fact I do have a UTI of some strange identity. I was given two very intense antibiotics which started to work on my urine, bladder and prostate almost immediately, and my symptoms and associated pain are slowly being dealt with. In two months, I will be going in for a complete workup on my urinary tract, and then will find out how damaged it is.
My question this morning, is; how do you deal with the incredibly slow nature of dealing with this disease, and how and where do we find the strength to keep on going when we know our bodies are falling into permanent disrepair.
I am now hurting, both physically and emotionally, but I do carry on, and I do look forward to feeling well again, but that goal gets further and further away with each passing challenge.
How do you guys all do it?
Love,
Joe K:
Dearest Tim,
I suppose I do whatever I must, simply because I want to live. Having dodged the Grim Reaper a number of times, I am very cognizant of the value of my life and I am not yet ready to give in to medical issues. Still, I hear and feel your pain as I fear that, one day, I will face issues that may effect my quality of life and I honestly do not know how far I would be willing to go, to stay alive.
I wish I had more motivation or whatever for you, yet it still comes down to the question of: "How far will you go to remain alive?" I loath such questions and when you have to start answering them, it is time to really plan for the end. Personally, I hope to die in a way that is simply quick. I will not linger nor be kept alive by machines. I do not know Tim, I am pondering that very question, just like you and sometimes I wonder just far I am willing to go.
We will talk soon.
All my love.
RapidRod:
Tim, it's one day at a time my friend.
DanielMark:
My question this morning, is; how do you deal with the incredibly slow nature of dealing with this disease, and how and where do we find the strength to keep on going when we know our bodies are falling into permanent disrepair.
Tim,
Given these medical challenges you're dealing with lately, it's not surprising that you would feel discouragement. Who wouldn’t?
For six months of 2004 I lived with the agony of anal warts gone ballistic while awaiting laser surgery. Walking, sitting, even laying down brought little if any relief. I popped Tylenol 3s like candy, but they really didn’t relieve the pain either. On top of that I was reduced to living in a homeless shelter. The desire to escape my circumstances was powerful.
By sheer willpower I managed to endure until September when I got an apartment again and went in for laser surgery. The doctor was astounded that I no longer needed any pain meds post op but I tell you, the healing pain from the surgery was almost a relief compared to the agonizing pain of living with the warts. Thankfully, they never returned.
I am 47.5 years old. If this were the year 1900, I would have already surpassed the average lifespan for healthy white males in North America which was 47 years then.
I wish I had some magic solutions for facing life’s challenges to share with you Tim, but I don’t. I have no words that might comfort you either. Whatever other medical challenges come my way, I plan to just keep going forward and going through them one by one until I am no longer able to.
Daniel
PS: I hope all this gibberish made some kind of sense.
kellyspoppi:
fellow members and quests of this site,
this week i have been homebound with the flu, trying my best to regain my strength as quick as possible so i can attend aidswatch in DC on monday.
i can honestly say that this is the first time i have ever been this ill where i had to miss a week of work. although i have a very loving & attentive hiv+ wife, being alone during the day while she was at work could have made this quite challenging for me. you know, that ole hiv mind game kickin in thang!
instead, i had the benefit of a home computer and therefore access to this site. i have read many topics, provided input where i thought i might be able to help others, gained access to info from fellow posters on my wifes co-infection issues, even laughed my a__ off while participating in a sustiva related dream excursion.
what a bonus for the homebound this website is. granted, not all plwa/hiv have access to a home computer, just as not all of us have complete access to care. but for those who do, there is so much valuable information being shared throughout these forums, for pos & neg alike, it makes me proud to know it is available, and that i can be a part of it.
so in answer to those who say where do we find the strength.......? i say, by being resourseful we have the ability & the power to take a negative situation and make it a positive. at our lowest point we have the ability to make others feel whole again, breath life into a desperate situation for others, provide hope where there is none, and at the same time, empower ourselves through information sharing with others who have been there.
this week reminds me of a related story i heard leo tell josh on an old west wing. it goes something like this:
a man is walking down the street and while daydreaming happens to fall in a huge construction hole. after trying his best to get out of the hole several times unsuccessfully, he starts yelling out for help.
a priest is walking past the hole and hears the man yelling. as he stands over the edge of the hole, the man yells out, "father, i've fallin in this hole and can't get out." with that the priest writes out a prayer, throws it in the hole, and then keeps walking.
as the man continues to yell for help a doctor walks up to the edge of the hole. the man yells " doctor, i've fallin in this hole and i can't get out. can you help me?" the doctor writes out a script, throws it in the hole, and continues on his journey.
as the man, now very angry, yells even louder, a friend of his comes to the edge of the hole. "fred, thank god your here. i've fallin in this hole and i can't get out. can you help me?"
with that fred jumps down into the hole. the man says "fred why did you do that?" fred says "i've been here before, and i'll show you the way out."
spending time this week on this site has given me the opportunity to see many fred's/friends helping others out of that hole, giving them the source of strength to carry on.
"you do what you can do with the tools you have for the benefit of others"