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Amadoda
Member

Reged: 03/02/07
Posts: 13
Loc: Washington
Newly diagnosed. Need to chat, find support
      #225975 - 03/17/07 11:35 AM

I was diagnosed in February and went through I guess all the usual reactions. More anxiety/fear, depression etc etc. Started meds (due to High viral load close to 200 000 and low CD4 around 100)and it seems like I almost immediately started to feel better. A lot of fatigue and shortness of breath etc has begun to abate. Is this just mind over matter?? Can the medication regime be working that quickly? (Truvada +Lexiva + Norvir) Also I do not appear to experience the problms I read about here in terms of side-effects. Is this too soon to judge?
I tend to become very focused being HIV positive and I do not want it to be my life. Any hints as to how one starts to move on? Are support groups in ones area a good thing or does that simply reinforce ones continual focus on being HIV?

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sunflower
Grand Master

Reged: 08/31/06
Posts: 159
Loc: AK
Re: Newly diagnosed. Need to chat, find support new
      #225977 - 03/17/07 12:25 PM

HI sweetie - It is a shocker to find out your HIV+ so let some time pass and get used to it - it does loose some of its intensity after awhile ;). The drugs do work wonders. The fatigue seems to come and go but starting meds will help for sure. There is a ton of information on this website - start reading about the how HIV works, your treatment, what to expect - knowledge will help settle some of your fears and getting to know the virus takes away its emotional power. Make sure you have a good HIV Dr. one who keeps up with new information and you feel comfortable with. Keep a medical notebook so that you can track your counts over time and have correct information if you move or change Drs. I put my lab results in there and copies of my prescriptions - I should chart how I feel because I am struggling with fatigue and keep a diary but haven't started that yet.
There are a lot of great people here on the boards - I am sure others will have good advice also. Use us as a sounding board, a shoulder to cry on, and friends to vent to - You will be OK. Take good care of yourself and Be DILIGENT IN TAKING YOUR DRUGS! you need a 95% adherence!! to keep the virus from mutating and becoming resistant (or so I have read). I am not sure on support groups - I have not gone - sometimes I think I should but never get around to it.
Love ya - Lor

--------------------
Focus on your potential.

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AIDS2HIV
Unregistered

Post deleted by Becky new
      #225978 - 03/17/07 01:34 PM



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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Newly diagnosed. Need to chat, find support new
      #225981 - 03/17/07 02:13 PM

Being diagnosed is a shock in itself. I was there just over a year ago. And it can kind of consume you for a while. It's good that you are on meds and doing good. I agree with the others that you can see a quick turn around. You should see a dramatic drop in viral load very quickly and with the right meds you will be undetectable within a few months. You should also see a turn around in that CD4 count. I've gained 200 CD4s in my first year but I took the aggressive approach and started treatment with a fairly high CD4.

I can tell you that as you begin to see an improvement in CD4 and gain confidence in your meds and your doctor that the HiV thing tends to take more of a back seat. Of course, you have that daily reminder when you take the meds. But I'm 15 months out from my diagnosis and I really seldom think about it now. My life is back to normal (depending on your concept of normal) and I'm doing about whatever I want to do. I'm healthy and feel good.

So give it some time and just move forward with your life!


--------------------
David
Sustiva, Epivir, Videx EC


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planonstaying
Regular

Reged: 02/20/07
Posts: 39
Re: Newly diagnosed. Need to chat, find support new
      #225987 - 03/17/07 04:56 PM

I am newly diagnosed as well. I cant speak to many experiences it ios pretty new and at times raw and overwhelming to me as well but.... ( now you are warned it may be BS)

Getting tested was the best gift i have ever given myself. before being tested I was infected and undiagnosed. I am still kind of wrestling with this thought but, nothing changed when i was told i was positive except I gained access to treatment

SCREW BEING AN ISLAND
I reached out to a local AIDs organization for support and services. I am taking a small dose of Xanax for anxiety and although I was very sad for a month I am not depressed. I had something to be sad about. Be gentle on yourself being sad is normal I think...or so they told me. I am still having some mood swings and minutes/moments where it seems overwhelming. I am trying to look at the thought when it pops up" I have HIV" , aknowledge it to myself and move right along. I don't want to dwell any more. The week I found out I didnt leave the house 4 days. That's it it's time to be a pitbull now.
Pitbulls are bred to bring bulls down. A pitbull grabs a bull by the nose and slowly, relentlessly, brutally brings it into submission and to the ground. It's pretty amazing when you look at the two animals side by side. Well accepting I have this virus and living with it is my "Bull" and I have it by the nose and it's going down. I am running my life not a strand of RNA wrapped in a protein case. I am tenacious, resilent and a fighter. My guess if if you weren't you wouldnt be posting. I dont have to go thorugh this alone. . I am sharing with a few trusted friends what's going on, getting professional help and doing things like going to see a movie( just stepped in) A strand of bamboo stands up to a storm, a single shoot falls over to a strong breeze..I think Kane said that on Kung Fu


SCREW MY LABS
I dont say I want to be ignorant of them or un educated about them but, damn I am not going to live blood test to blood test and use that test as the gage to how I am feeling. I realized i had started too. I am obcessive and damn, it would suck liiving to hear what my blood counts were. I feel great again and alive after feeling horrible and LIVING is the plan. The other option sucks. I have the rest of my life in front of me. I refuse to spend it hostage to a peice of rna wrapped in a protein shell.

SCREW SHAME
I feel comfortable in my own skin again most of the time again . I truly believe that how i feel about me will have a tremendous effect on how I deal with the virus physically. If I am sad and withdrawn and stuck and in fear and ashamed. I will not be living and like I said the other option sucks so, I am doing the things I can to stay out of that place
i am also no longer beating myself up for catching it. People sunbath everyday without sunscreen and get sick from it, they smoke, they eat Mcdonalds, they drive to fast, they dont wear their seatbelts. There is no stigma attached to the consequences fo those poor choices....I refuse to feel stigmatisized because I got sick from sex and the rest of the world needs a good therapist. I can take precautions and make sure no one comes here in the future because of my bad choices but can't undo past choices. I can only deal with them and forgive myself

I am glad these boards are here. They are one more tool to call up when I am feeling alone. Oh and I have a tiny LD and tend to reverse letters and words and not realize it. It doesnt bother me at all but it seems to caue swellling in some people's brain. If it does you can thank me later for helping you learn some patience!

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Amadoda
Member

Reged: 03/02/07
Posts: 13
Loc: Washington
Re: Newly diagnosed. Need to chat, find support new
      #225988 - 03/17/07 05:27 PM

Thank you for your great response. I think you are right about being of a resilient spirit. I sometimes start crying for no reason, but it only lasts for a short while and I tell myself its crp to waste time and get morose about my mistakes in the past. A philosopher (/) once said, "If you live in the past it becomes the future." I am optimistic that as I get further away from the initial trauma, I too will develop your "pit bull' mentality. Incidentally I own a miniature bull terrier, so believe me I know all about that attitude. He is like a bulldozer when he sets his mind to it. Thats my aim in terms of fighting HIV. Anwyas you have given me a life on a rainy afternoon here in the Pacific North West

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Amadoda
Member

Reged: 03/02/07
Posts: 13
Loc: Washington
Re: Newly diagnosed. Need to chat, find support new
      #225990 - 03/17/07 05:32 PM

David,
Thank you for your reassurances. I do feel a lot more connected and less trapped in my own little cell with this "problem". It is so hard initially to know what is right etc. I feel I have a good ID doc. He seems to know about drugs that work now and those in development. Anther kind guy on this forum suggested I get onto antibiotics -Bactrim - given my low CD4 count just because I may be more vulnerable to OI. I consulted my doc and he put me on the anti-biotics. But I feel there is so much to learn and where does one start.?Seems like this site has a wealth of data and support.
Thanks a ton
Eric

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Amadoda
Member

Reged: 03/02/07
Posts: 13
Loc: Washington
Re: Newly diagnosed. Need to chat, find support new
      #225991 - 03/17/07 05:36 PM

Thank you. Your comments help a lot and they put me in a more relaxed frame of mind knowing that although we all have particular systems and metabolisms,others have similar experiences. It is still unnerving though as one learns more it sems like the hazards loom (liver problems/triglycerides etc) but I suppose I will fight those when they become an issue. Now I need to take my life in my hands and cease being a 'victim' of all this. I did it to myself so i need to take care of myself and my future.
Thanks again

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Amadoda
Member

Reged: 03/02/07
Posts: 13
Loc: Washington
Re: Newly diagnosed. Need to chat, find support new
      #225992 - 03/17/07 05:42 PM

Lor,
Thank you, thank you. You are a kind person and your commenst are a fund of wisdom and good hints that I will definately integrate into my adjustment to my 'new' life. Some days I feel re-born! I had lived under the shadow HIV for about 10 years too desperately afraid to confront the issue and get tested. I got sick over time. Recurrent illnesses and I knew what it was but just could not get myself to face the truth. (What a pathetic individual I was>) In some ways I feel like I am out of the darkness that surrounded me, but I have to confront the reality now. So far I have been very meticulous about taking the drugs. I hope I do not slip into a routine where I forget at some stage. i do write down every time i take the medication just to remind me to do it.
The idea of going to a support group seemed like a good idea, since i do not have any associate or friends whom I can confide in at the moment.
Thanks
Eric

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Newly diagnosed. Need to chat, find support new
      #225995 - 03/17/07 07:19 PM

And keep in mind Eric that those don't become an issue for everyone. The triglycerides seem to be more of an issue for those on PI regimines. And if you don't have any inherited or developed resistance then you have a whole realm of possible meds if you need them. The liver function issue doesn't impact everyone. Basically live a healthy lifestyle and see what happens. Try not to worry too much in advance. In fact, my liver enzymes were 3X normal the day I started meds. So even before meds they just happened to be elevated. After 2 weeks on meds they were back down in the normal range. They have held close to the normal range (popping up to 1.4X once) through out my year on meds. My doctor said that a blip in liver enzymes insn't anything to worry about. I use a nurse practitioner who is an expert in HIV for my general medical treatment and as a second opinion for the HIV. She told me that she doesn't really worry about the liver functions until the enzymes arae 5X normal over a period of six months. There is a lot of scary stuff out there. Actually, when I read the side effects of the meds I might be on in my study I had decided to forget about meds. It scared me. Then I found out that the major side effects affect very few individuals and most side effects pass within a week or two. So that made me more comfortable. I was an unlucky person to have a rare side effect of myalgia (extreme muscle pain) and had to have my first meds change after 17 days. But after that change things settled down and the rest of my first year on meds has been relatively uneventful. My CD4% has gone frmo 12% to 30% and my absolute CD4 has gone up about 40% from the 500s to the 700s. So I'm thrilled. Thats just in 48 weeks of treatment.

--------------------
David
Sustiva, Epivir, Videx EC


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TRex
Master

Reged: 01/09/07
Posts: 129
Loc: California, USA
Re: Newly diagnosed. Need to chat, find support new
      #225996 - 03/18/07 01:36 AM

I was diagnosed this past November. I started Atripla in January. In 4 weeks my viral load went from 83,700 t0 54 and CD4 from 183 to 303. I understand what you are saying by the way you feel...I feel remarkedly, physically better. I agree with another response..don't let this rule your life. You will have ups and downs and thats ok. Don't beat yourself up over this. It is manageable. There is life to live..so go for it. We are all here for each other even if it's just in writing. I sought out a local HIV organization. They are awesome. Its a place where a person can feel comfortable with their virus and not worry about what people say. On that note, who cares about what others think. Your true friends and family will be just that..there to support you and be there when you need them. The focus part: I was consumed at first. Once I became knowlegable..then I started resuming a more "non-HIV" life. Yes, It will always be there..but so will traffic and taxes. Be well my friend.

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Amadoda
Member

Reged: 03/02/07
Posts: 13
Loc: Washington
Re: Newly diagnosed. Need to chat, find support new
      #226006 - 03/18/07 08:37 PM

Thank you all very much. There is a lot of wisdom and kindness in these forums and it is deeply reassuring to know how many people are out there and willing to reach out even typing a couple of words. I am very much moved by this. I can draw a little strength in the battle ahead and in the joy of living.

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Newly diagnosed. Need to chat, find support new
      #226021 - 03/19/07 11:33 AM

You shall have to go through the process of disbelief, anger, dispair, deal making and acceptance. There is no other way. Give yourself over to the stages and work through them. After awhile AIDS becomes like a game of baseball - nothing much happens for a long time then there is a flurry of activity and then nothing again. Most of the time AIDS is a tedium of pill taking and watchful waiting. Quite boring, really. You eventually have to find something to distract you, like meaningful effort...

Cheers,

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

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: Newly diagnosed. Need to chat, find support new
      #226022 - 03/19/07 11:51 AM

I am glad to see that so many people reached back to you. Hate to see people newly diagnosed, becuase I (Like everyone who responded to you), understand the emotions and the feelings you are going thru right now. But seeing you reaching out to others, and really being "open" minded to their responses, gives me comfort in realizng that you are going to be ok.
Yes, if you find the right regimin of medications, they can work that fast. some days may be rougher than others, but for the most part, you know hiv can be fought, and can be controlled. I have been infected for 15 years now, and there was SO MANY days at first when that was all I could think about...... and though I never forget, it really isn't the biggest problem on my plate anymore. Life gets back to the same hectic rat race it once was. right now I am battling my own demons between divorce, child support and a soon to be X husband with drug issues. so, see what I mean..... Hiv right now is the LEAST of my problems.

I look forward to getting to know you better and you have an ARMY full of people on your side here.

love and prayers,
debbie

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Amadoda
Member

Reged: 03/02/07
Posts: 13
Loc: Washington
Re: Newly diagnosed. Need to chat, find support new
      #226061 - 03/20/07 12:40 PM

Deb,
You are right. When one realizes the magnitude of the problems that others here face, you realize how little one's own concerns are. They seem quite petty compared to people who cannot afford m eds (someone here having to take meds every other day to try to save money.) It breaks ones heart. What is it with health care today?
I sincerely hope that you prevail against your "demons" as you put it. You sound like a brave soul.
Hang in.
XOXO
E

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