Where do we find the Strength......?

[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"

god bless you all for that 

kellyspoppi   
 

[Christine]

The past year has been difficult for me also. Right now I am living one day at a time, for both myself and my loved ones. I take what comes each day, good and bad.

When the days are bad, I think of others throughout history who have suffered. People in the early days of hiv; people who live through war, and famine. People who lived through the Holocaust. It helps me have perspective on my own problems.

When I was in college, we were required to read Night by Elie Wiesel. He recounts his time in a concentration camp. For me, it helps to know that others have suffered, and yet still have dignity and strength of character. Others who have suffered, but are able to find goodness and peace in the world. I have reread Night many times over the past years.

That is the philosophical part of me. The physical/mental part of me takes Ativan when the stress is high, talks to the therapist, and has a good cathartic cry, followed by a hot bath.

Christine

[heartforyou]

In my current state of mind, it saddens me to read this story and the other as well.

Tim, if thoughts and energy could make you better, I would give my last breath to do so.

Just know that I am connected.

In love

Hermie

[sierrarancher]

Dear Tim,

I know where you are coming from too, having 3 cases of cancer and my whole life changed.  I now am 'homebound', but I have adapted.  I try to keep that in mind, when I am facing a difficult situation, that I will adapt to it.  That doesn't mean I don't despair, sometimes to the point of not wanting to get out of bed.  But time, in and of itself, I find to be a great healer.  I now sometimes think I am in a better place than I was before my cancer, but I know that the accumluation of one scare after the next gets very tiresome.

These are some of the ways I find strength:

1.Utilizing the vast resources of the internet, including this forum.  I don't have the panic I used to experience before the internet was available. Now I can do a tremendous amount of research on my condition, this relieves a lot of the panic I used to experience when a doctor gave me some horrible diagnosis. 

2.Coming to forums or support groups like this one so I know I am not alone.

3.Getting outdoors, especially taking walks in nature.  I find that to be very calming and therapeutic.

4.  Escape, usually via some form of entertainment.  Right now I am hooked on Second Life (www.secondlife.com), a virtual world where my subconscious and conscious can play and create on a level which was unimaginable before.

5.  Asking for help.  I used to think it was a sign of strength to fight my battles on my own, also there was a side of me (from childhood experiences) that thought that 'no one cared about me'.  I actually endured terrifc pain during my radiation therapy, because I thought I would be a 'sissy' for asking for pain relief (that was in 1998).  Now I know that there are a lot of resources to help and have met some real angels.

6.  Going to the gym, if I'm well, and trying to build my physique.  It is my way of physically battling this disease.

7.  Self-expression.  For me it is writing and photography.

8.  Xanax.  It puts me to sleep every night, so I don't ponder on all the negative.  And if I have a huge 'scare', I'll pop a little in the daytime to calm me down.  Although, I am addicted (an in like a heroin-type addiction) to it.  However, I was an insomniac for my entire adult life until I found it, and frankly my quality of life is much better with it,despite being 'hooked'. 

Big HUG.

Karim

[Jeffreyj]

If I could add two things to karim's insightful list:

1)I love to BLAST my favorite rock and roll songs and pretend I'm a rock n roll star..It sounds odd i know but it cheers me up most of the time.

2) Watch a good movie.

I try not to look to far ahead or too far back. These two things help me do that.

Stay strong Tim.

I'm off to "Sufferjet City"...

[BT65]

Sometimes I feel like I'm going to fall apart.  The only real support I have for the HIV thing is this forum right now.  Not because I don't want to disclose, but because the people I do know in this town who are HIV+ are all strung out on drugs and the rest, well I guess, they just want to keep private.  I do have good support for my recovery regarding addictions.  I go to AA/NA.  I have a FEW close friends that I talk to, but no one else here that's HIV+.  I try to pray a lot.  So many tragic things have happened in this town recently.  A cop was shot and killed a couple days ago by some wacko on drugs; a friend of mine went to visit his mother and found her dead; they had a tornado just west of here; there was a horrible accident on the Indiana toll road today that killed eight people.  Does tragedy just happen in large volumes?  It always makes me a little nervous, like what's coming next?  Thank God you all are here for me to vent to!

[kellyspoppi]

betty,

with all that tragedy around you, i understand how difficult it must be to maintain a positive mental attitude.     but doing so is a must!

there are two things i highly recommend you endeavor to acccomplish.

first, find yourself, through your aids service provider, a good mental health social worker or professional therapist. someone who can teach you the art of doing cleansing meditations.

when i was at my deepest sense of depression over loss of my partner, then my dad, and trying to deal with this virus for the first time on my own, it wasn't until someone guided me through a cleansing meditation, that i finally felt whole again.

over the course of the years after that happened, i began reading alot of self help books, with the overall theme, dealing with grief and loss. then someone turned me on to a book called the celestine prophesy.

i have read this book 3 times, and each time i have read it i have found myself more open to the possibilities of the universe around me, and have come to gain a better understanding of what my role is in it.

currently, there is interest in a new book/dvd called "the secret" with similar principles to the celestine prophesy. in either case, you will be enlightened and enriched from their teachings.

hope these suggestions help. we are all here for you.

kellyspoppi   

[BT65]

Thanks Kelly!  I have that book.  I do have an excellent therapist, which I've had since 1991.  He's a really "cool dude" who has been with me through thick and thing.  He and his wife are my granddaughter's god parents also.  His wife is in the local theatre and a couple weeks ago he took me to see a play she was in.  I have a lot of support also through AA/NA.  Sometimes I just need to vent I guess.  There's a saying that I have hanging on my bathroom mirror:  "All human wisdom is summed up in two words-WAIT and HOPE."   

[kellyspoppi]

great saying betty,

see if your therapist can make you a guided cleansing meditation tape that you can listen to in the comfort of your bed or couch. i find that if i need it, a 20 minute meditation can put a brighter perspective on the rest of my day.

good talkin to you.

kellyspoppi

[rickbc]

Hi:  I get my strength from just being alive.   I have been positive seens 96 and started meds one year ago.   Three years ago I had a heart attack and was down and out for 3 months.  It made me realize that everyday is precious and I try and live it like its my last.  Even the mudane things that I tend to gripe about.  All I do is remind myself that I can still do them and for that I am thankful.  Old motto "one day at a time"  gets me through.