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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Ok - Now what happens
      #163686 - 11/08/05 10:57 PM

So I have moved through all the stages without drinking or killing myself. Guilt, Sadness, Anger, Remorse and now Acceptance. I am sure I moved through others, but I just dont care about those ones.. Me and My Husband are pos. We are seeing a super excellant HIV specialist who has been super and supportive and will actually tell us whats next. Meds down the road he says. Ok, Ive excepted this. "You will be fine" I hope for this. Now its a waiting game of being in the "gray area". This should be a new medical term. Where am I? Oh, well, I am in the gray area. Where are you? So my head starts thinking and whirling about. Thank God im using a bit of Paxil to help me quit "Roominating" Oh yes I roominate. I am told I think to much and should really stop that. My husband tells me to stop that all the time "mushbrain". Need a baseball bat would be my remede. My cards are always out on the table and I have confided my bosses at work, supportive loving and caring. I have confided in all my family, supportive loving and caring. I have confided in my closeest friends, supportive loving and caring. Gosh things are great. Oh but no... Eric you will be subject to meds sometime in the future. Great - will my body be reseptive of these?? Eric - The doctor remember gave you this Merc free test which actually will hellp him decide which meds will work the best on you UP FRONT. Wow, well thats great. How long will one drug last? Then I here when they switch you it gets ruffer? Any truth to this? I dont know. I am just running amuck on this. Suppose I could just ask my doc who will tell me the truth cause I trust him with our lives. I do trust him. But I dont really want to right now. I am 41 and my husband is 45. Is there enough switches out there to keep us going for the rest of our natural lives? Or are my chances higher getting hit by a train. Wait, there are no trains in this valley... Hope they last and work for both of us.. A bit worried about this phase which will last for the remainder of our lives. Or, heck, they find a cure soon and we get a shot and say your cured. Will I beleive that?? No, it probably wont work on me. I wish I could just enjoy the day RIGHT NOW and not think of the bridge I and William have not crossed yet. But I do. I do .I do.. I only want the best for both of us. . By gosh Im ruminating again.. bye for now.. I need my Paxil.. lol

I really just need to hug him, love him and thank God for today.. Gosh I feel better now.. But it wont last long..

Eric

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ny10001
Grand Master

Reged: 07/08/05
Posts: 199
Loc: New York
Re: Ok - Now what happens new
      #163696 - 11/09/05 08:21 AM

Will your medications work when the time comes? Absolutely. How long?....well, that depends largely upon your ability to adhere to the regimen...taking the medications every day without fail at the same time each day. The leading cause of medication failure is when there are missed doses.

When a dose is missed, there is a risk that the medication level in the blood stream drops to the point that viral replication begins again. The problem, however, is that the medications may still be present to some degree...so it partially interferes with the viral replication process. When that happens, the virus can mutate. Mutations can produce resistance.

So...taking the doses every day at the same time is the best thing that you can do. If you do that...then yes, there's a very good chance that you can live out a normal life span.

Good luck, and I'm glad that you have each other to provide support.

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jenn
Guardian

Reged: 09/14/05
Posts: 325
Re: Ok - Now what happens new
      #163777 - 11/09/05 09:42 PM

Eric,
I'm gonna fly to Aspen myself to set you straight....:-)
Jenn

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Ok - Now what happens new
      #163778 - 11/09/05 09:47 PM

i work for two exremely kewl hotels... Ill set you up. I need a good ass kicking.. As William will attest to...
Sorry, Im just a scared sometimes... But not always. But sometimes...

Eric

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jenn
Guardian

Reged: 09/14/05
Posts: 325
Re: Ok - Now what happens new
      #163779 - 11/09/05 09:52 PM

Who's to blame you? Not me. But I really like you and I really believe in the sophisticated medicine that exists today, and I think in my soul that once you understand the level of sophistication they can do today - I think that you start feeling more relief and less anxiety.
Good, we'll get together.....

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Ok - Now what happens new
      #163838 - 11/10/05 12:44 PM

I've been positive for more than 21 years now and full blown for three; in that time I've found that my life with HIV is like a baseball game, long stretches of nothing much, broken by short periods of panic and excitement. Like many I reckon, I find relief in those moments of panic when my health falls off the cliff, chiefly because they break up the monotonous waiting for something to happen. I wait expecting something to go wrong and then when it does both my expectations are fulfilled and my watchful waiting is relieved.

This is not a healthy way to live at all. We rather should seek peace always. In awakening us to our mortality and the impermanence of all things, AIDS is a great gift. Siddhartha's last words were "Be diligent in working out your salvation"; you can forget all about AIDS for long stretches of time in that work.

Good luck, friend.

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
So I want to be the FIGHTER new
      #163844 - 11/10/05 02:18 PM

ScotCharles.. Thanks for your words...

I dont want to live life waiting for the next event that marks something related to HIV.. I am a Christian and have been since the day I came into this world. My relationship with my higher power is stronger now than its ever been. I know I am saved and will pass through this life into a better one. But in the mean time.. I want to not be a tragedy, I want to be that fighter I have always been. I think of myself (or I thought) as a strong person. Many people say I am strong. I just dont feel that way right now.. Its been 3 months since my diagnosis and I am still fixating on what could go wrong with me or my huisband.. My faith needs to get LARGER than life right now so I can get through this. I want to see HIV as a blessing and not the opposite.. I have no choice but to turn this into something positive in my life. I am 41 years old, "juist how long did you think you would live Eric?" was a question that was said to me awhile back from another HIV person. I would be happy with a few more quality years. If I dont change my mental status and get it to stay put, its not going to go the way I want it... "But its a process not a destination". bla bla bla... That doesnt help me presently.. How long does this take! dag-nab-it..

Eric

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: So I want to be the FIGHTER new
      #163860 - 11/10/05 05:11 PM

Short answer is, the rest of your life. Fighting HIV is just another way of making deals, "If I jog everyday, take vitamins, eat right, I'll stay healthy." What will you do when that fails? Likely you will plunge headlong into depression, regret and another round of deal making. Isn't there a better way than bouncing around emotionally.

Glad you feel you've been saved, I doubt that is true in reality. Saved comes from the word salvation which connotes returning to a place of refuge, note the word "returning".

Salvation is a journey, not a destination, as tired a phrase as that has become lately. My AIDS journey has taken me through fire, that bit by bit is burning away that which is not my true self. A lingering illness like AIDS is a gift of salvation, that with each bout of pain and loss of function, burns away that which obscures our spiritual self. Don't worry about where you are going, without doubt it is to the right place. Rather pay attention to the journey, recapture time, contemplate the loving face of your god or goddess, but most importanty stop rushing headlong through your life that will all too soon find you gasping out your last breath.

A Christian mystic once told me when I asked what death was like, "We are most at peace when we are least aware of self. Death is the release from selfdom, the embrace of the eternal, and is that peace we know only for fleeting moments in life."

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: So I want to be the FIGHTER new
      #163861 - 11/10/05 05:39 PM

We evidently beleive differently.. I was saved before I was born. I dont feel the way to salvation is through pain and loss, these are just a part of life no matter what life deals you. Staying healthy helps the physcal and the mental aspect is what I am trying to come to grips with. I walk with God everyday. I feel his presence about me. This was not his doing but rather my free choice which he gives me. Philisophical is something I dont dance around. My idea is to get on with life and put this behind me and deal with it as best I can. Very simple. I dont need to wallow in someone elses beleif when its not mine. I do not plan on passing from this earth anytime soon. Sure, eventually we will a break down from something. I tho am not ready to give up and I will fight the mortal fight because I have something I can give back to the world and do this every day I am present. I give back love and caring to those I meet along this journey. Trust me when I say this - I will be on this site until I become a bloody member then supreme Member and I bet that will take me at least 20 damn years to get there... And during that time, I will be there to help anyone who I can make this transition that I am in right now. Right now, I am on the reaceiving end of love and caring. I will return this blessing when I know enough and learn about all there is to learn about. I dont want to talk about death for I have everything I could have ever wanted Sometimes we get so coughyt up in the futrure we forget to take pleasure in what we have. We become obsessed with "I want, I want, lets make a deal, and there is no room to notice that we are already standing NECK-DEEP-IN-GRACE.

Eric

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ItsFaith
Legend

Reged: 10/17/05
Posts: 1329
Re: So I want to be the FIGHTER new
      #163863 - 11/10/05 07:26 PM

Eric, you said you are Christian.....as am I. I thinkn often of the Footprints poem....know that in the darkest times of your life, God is carrying you....he will never abandon you, even if you feel alone, he is there with you. Sometimes, when I'm scared, or down, or anything like that, I will close my eyes, and mentally crawl onto the lap of my heavenly father....like I would crawl on the lap of my daddy when I was little....I know it may sound hokey...I don't usualy discuss such things with anyone, i keep it to myself because it isn't for some people, but sometimes when we are all grown up, we still want to be comforted like we were when we were little. I'm a mom of three, but when I get a cold or flu..the first person I call is my mom....I look to God for the comfort now. Maybe in that comfort you can find strength.

I will pray for you always.

Hugs
Faith

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soimnotalone
Fanatic

Reged: 10/28/05
Posts: 65
Re: So I want to be the FIGHTER new
      #163872 - 11/10/05 09:10 PM

make room for one more outsider looking in...
Unfortunatley I also am feeling like you, I have always believed and loved GOD even when I knew I was doing wrong, though I hope I don't go to hell for what I have been thinking lately thoughts like WHY ME, come to mind? and if FATHER you loved me why did you let this happen, or my biggest thing "I know people that have done and continue to do much worse things and are not SAVED and they seem to be going through life happily ever after while I am like a hamster in a maze on going around and round with thoughts of death...when and how will it come, this emotional rollercoaster drives me crazy. THEN I REMEMBER THRU GOD I HAVE BEEN DIRECTED TO REALLY GOOD TREATMENT considering my finicial status (I am unemployed and have medicaid, and will more then likely be denied SSDI because according to the social working I am gaining weight and that is progress. I also realize the WE ARE NO DIFFERENT then people with High Blood Pressure, Diabetes, and other diseases/ailments that need treatment in order to survive, we do not have CANCER that can not be cured and hopefully none of us were told we have less then a week to live. We don't have unexpected strokes seizures, and we can walk talk think grieve complain put on our own clothes and feed ourselves all through the GRACE OF GOD, so when I feel I am ready to give my middle finger to god, I put both my hands together and say THANK YOU FOR ANOTHER DAY I AM BLESSED TO HAVE (even with my hard-headed kids)
Peace and Love to all who sat thru this LONG post ;)

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: So I want to be the FIGHTER new
      #163920 - 11/11/05 10:35 AM

I will keep you in my thoughts as well. We are all on different paths and I don't presume to advocate that what has helped me will help you. In truth nothing I can ever say or do will help you, you must do that yourself. That said, get about the business of your salvation and find that place where your peace resides. Life is a river flowing to the sea, my friend.

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
So I rely upon Friends and God new
      #163946 - 11/11/05 05:01 PM

I beleive God speaks through people. Some more than others and some I can understand and others takes more time. Its funny Faith that I have Footprints in the Sand on my wall as I walk into my Bedroom. I went without God for a time years ago because I thought he was causing things to go wrong in me and my families life. Slowly this changed and now a 180 even through this diagnosis. its unfortunate when life goes well, we sometimes forget why we are here.. Sometimes I feel very alone, worried and isolated. But then I realzie where I am and say this is not how it has to be and get out of that and start talking and sharing my feelings. Thank you for telling me about how you find comfort. I go outside and look at the mountains surounding me. I walk down paths that lead somewhere. I feel I am on a path, but will never know its destination. I want to be able to handle what life puts in my way (not god but life). Never give up until the miricle happens... NECK-DEEP-IN-GRACE

LOve Eric

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: So we ALL are Fighters new
      #164037 - 11/13/05 12:59 PM

Soimnotalone...
I use to think that my HP had it in for me and my family. Why should I put my faith in him if things are NOT going to go my way... After a bunch of drinking and poor me's and 10 years lost out of my life 10 years ago my perceptions of god changed. God gives us free will. We can make a mess out of our lives if we want. We can also ask for forgiveness and it is given. "Stripes we are healed." I dont ever make deals with him anymore "if you do this, Ill do that". But "If it be your will, not mine". Works so much better... One day at a time...... Todays pretty darn good..

Eric

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: So we ALL are Fighters new
      #164039 - 11/13/05 01:24 PM

hi eric....
i read your words.....and I know exactly what you mean. there was such a long time (when I knew I wasnt doing what i should...disrespecting my own body and putting myself at risk) and i would talk to God and say...."I promise, I will do better, please let me be free from hiv...and I promise, I will stay on the right path"...course I kept my end of the bargan...met a man I would marry. talked about hiv with him and asked about testing and stuff. said he had tested (-) a few months before. I thought....well, i kept my end of the bargan, this will work. but thankfully, my eyes had opened to who he really was and when it came across time to hearing the truth about "his risks" and his illness and I was facing the "test"....even the 2 weeks I had to wait (and I knew it would be positive), i didnt figure this would be my punishment from him....I knew he had givin me "free will" to do this, and it be His will....I would get thru it...because I always turn to Him. and knew it would come from Him that i get my strength. !!

yes, we are all fighters in this. just by dealing, and living with it...but more importantly, accepting it.

love and prayers
Debbie


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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Surviving the Fight new
      #164041 - 11/13/05 02:16 PM

Hi Deb
You know somethin.. I flew back east to visit a friend who was diagnosed with ALS in July. We celebrated his 57th birthday that day. I organized getting a bunch of his old friends whom he has lost contact with over the years. We had two very enjoyable days with Dan. I took him to the KU med center for further testing. Got him all set up. Helped him all day. We talked about Spirituality and everything and whats on the horizon. I flew home after that, got diagnosed HIV, but kept in contact with my beloved friend Dan as he moved through a terrible disease that robbs your body of all movement but leaves your thinkiing in tact. I talked to him on the phone 2 days before he died and I asked him "How are you doing Spiritually?" He said "Im ready buddy". Dan had 3 months after his 57th birthday before ALS took him. We have a lifetime as HIV'ers. I wonder if we will be as well prepared to meet our heavenly father as Dan was. I am making it a priority in my life to make a difference in someone elses life. To make a difference in what others think and not be part of the collective wrong. I want others to know that in this world of ill-gotten gains, and me first, you second idea just doesnt work in my book. Finally, I want to have the peace and understanding that my life before and after this has made a difference. I will not go gently into the night. I will be saved and called a winner.

StF

Eric

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: Surviving the Fight new
      #164042 - 11/13/05 02:46 PM

Oh eric...I'm sorry about your friend. I too lost a friend not long ago to ALS. he was more like family than a friend. He was 59. His father also had ALS, so when people started to notice a slur in his speech (and thought he had been drinking, which....really I wish that was what it was), he knew what may be happening.
i have one photo of him at my sisters wedding, and then the following year (shorty after he was diagnosed) at my wedding, where he was using a walker for help. It is so hard to see that, but I am very grateful for the time that I had been given with him. I have a picture of him and I at my wedding which I have hung with my wedding photos. it is very valuable to me.
I know thinking of death is not easy....and as we will all meet that destiny one day. but as hard as it is when we loose a loved one, I always consider it as someone getting to the place we will all go, first. and we will meet again.

I like your way of thinking eric!

love,
debbie



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jenn
Guardian

Reged: 09/14/05
Posts: 325
Re: So I want to be the FIGHTER new
      #164386 - 11/16/05 09:18 PM

Eric,
Someone asked you just jow look did you expect to live? Tell them how long - 90-95 years old, I think we all want. Do they really think 41 is enough? 41 is just when a lot of people here are starting their families!
Jenn

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
90-95 new
      #164390 - 11/16/05 09:51 PM

Jenn will you come to our wedding whenver we get it planned?? It will be way before 90-95. When my head is screwed on a bit straighter, we are going to do something. We feel married already and everyone looks at us as if we are. So, we are. HIV has not changed ANYTHING with us. Sure, its something else we need to deal with, but boy, when we are together, we make every minute count. But we have always been that way before and now after.

Love to you..

Eric

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