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Anonymous
Unregistered

Way out in left field
      #139051 - 03/21/05 11:04 AM

I was diagnosed in August of 2003 w/ a vl or 750,000... and CD 4 count of 169/w no symptoms. Since then I have been on Combivir and Sustiva, my VL is undetectable and CD4 is 280. I was initially devastated. I have 2 small children, that are neg and healthy. I contracted this "gift" from my ex-husband. I have just recently started dating, but life is getting harder. I constantly find myself wondering if I will be here to see my kids grow up, as they are now 6 and 9. I am 30 yrs old. I am so sad every single day. I see all my friends enjoying their lives and just sit back and wish it was me, but I can't seem to get over this. I often think that my kids would be better off if I wasn't here so they wouldn't have to see me eventually get sicker and sicker. There is a part of me that thinks this is not a death sentence but what good is life if it has no quality. I am a mere shell of the happy person I used to be and I am finding it harder and harder to cope day by day. I am so scared and depressed, but I do a good job of hiding it from everyone. All they see is this beautiful young mother and they can't figure out why I am still single and living alone with my 2 children. I always here "you are such a nice person", or "you are such a giving person"... there is a part of me that knows this is true, but the thought of death overshadows all aspects of my life.... I don't want to die and I am doing well, with my medication. But everyday is a struggle. If I could just here someone say you will be okay, and I believe it, it would make my life so much better. But I really don't see anyone "like" me. I have been to support groups, but they don't seem to help. In fact they make matters worse, always talking about death and preparing for the worse. I want to talk about life, and get a positive insight on having this condition. It seems as if no one understands me. I get rejected from poz as well as neg people. I feel very alone.

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river
Expert

Reged: 03/05/05
Posts: 107
Re: Way out in left field new
      #139053 - 03/21/05 11:27 AM

Hey there ,
My heart goes out to you hon. And believe me I understand. I lost my child before it had a chance because all said it would be horrible for the baby to not have a mother to take care of him. Well that was 15 yrs ago. I can not turn back the clock. There are many things with this illness that changes our lives . Especially when one is newly diagnosed. Its a natural stage . But I'm here to tell you that it doesn't mean you wont see your children grow. gt married nd have babes of their own. I know that may be difficult for you to belive right now but it is true and you have to get your perspective in the right frame. This illness has taught me to appreciate each day. Now is when your life truly begins. And by wishing all this will go away your depriving your self the joy that surrounds you. You may not want to hear this hon but there are illnesses that are alot more devastating. You are able to wake each day and put one foot in front of the other, praise God hon. You have tweo beautigul children Praise God. This not the end of the world. It's the beginning . so come on now sweetie, put that chin up and look to the heavens and praise God for all the many blessing in your life. They are there but your blocking your own view.
And as for getting into another relationship , you don't have to think it must be with some jerk thats also infected. Any decent man that truly cares will understand and would probably want to learn about it as you need to also. So please hon cheer up . This isn't as bad as your imagination thinks. Learn about it. The more you understand the less fearful it becomes. And stay in touch with me hon . I'll help you in what ever way I can. This is just one of lifes inconviences hon and your strong enough to get thru it. mail me and let me know how your doing flogeo@comcast.net. You can have alot of quality in your life. Even more so now

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Anonymous
Unregistered

Re: Way out in left field new
      #139055 - 03/21/05 11:53 AM

thank you for your kind words. I am trying to deal with this, and any input or positive out look is appreciated more than you know. People can be so mean.

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Anonymous
Unregistered

Re: Way out in left field new
      #139056 - 03/21/05 11:59 AM

Thank you for your kind words and being so open to me. I really am having a hard time. I felt as though no one would want me after finding out what I have. I even registered with positivesingles.com in the hopes that I would find someone with this condition and everything would be okay, but it only made matters worse. Most of the men on that site that I have encountered only wanted sex, and not a real relationship and they really treated me badly when I did not fulfill their requests. I have 6 brothers and 2 sisters and I am the baby girl. So far I have only told the 2 youngest brothers and my older sister, and at first they seemed okay, but my sister made the comment, "Sometimes I wish you wouldn't have told me". She says it is an emotional burden to know that I have this condition, and that is not at all the response I wanted from her, but it's too late now. Because of this, I haven't shared this with anyone else. and I guess it is tearing away at me. I don't want to be a burden on anyone, especially not my family or friends. I did tell my best friend and all she says is, "Is that all, I thought you were going to tell me something worse".... This is not that comforting coming from someone who is neg. I don't mean to ramble on, but I thought that after a year I would toughen up and be able to deal with this but this is not the case.


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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: Way out in left field new
      #139068 - 03/21/05 09:33 PM

Hey, listen...You are an amazing person. By reaching out, you are proving to your life that you don't want to be sad, and you are heading in the right direction, with the right people. You will see how much MORE you get out of life, when for everyday you see your children smiling and having fun with you as they grow. you know it is cherished. I come from a big family too 4 sist, 4 brothers, and i think if i only told one or two of them...I think the burden so much more that they would feel is that, if something were to be wrong with you, or you got sick, they are carrying that alone. I would hope she wasn't implying, she'd rather you live with this alone. If you are a close family, it is hard to share with some. I am 33 yrs old, and have 2 children also. I have been hiv+ for 12yrs, and do you know my first tcell test was only 208, then I started to get sick (w/in weeks of dx). and 12 yrs later, I've reached a point where I can take a break (for a little while) from the meds. and don't ever be ashamed of what you are living with. There are so many more people like you in the world. (They just either don't say, or really......don't know!!!)
I am really touched that you would share your heart/emotions with us the way that you did. I hope you gain the strenght to share w/ us more. TRUST ME!!! you have a great future w/ your family. Oh, and your right, when someone who is neg to say "oh, big deal....is that it" I've gotten some of those responds. Let me tell you, I found them to be the ones who aren't negative, about your being positive. They are actually saying, I'm not going to treat you differently because you are infected. b'lieve me I told the world when I found out....and it really paved the way for knowing who my true friends were. My true friends were the ones who didn't care that I was infected, and still hung out, but were truly there for me when I needed a little help.

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Anonymous
Unregistered

Re: Way out in left field new
      #139095 - 03/22/05 10:12 AM

Thank you for the words of encouragement. It comforts me to hear this from someone in my situation. I must ask you with being (+) for so long, have you developed any side effects from the meds. I have lost weight. (174lbs in 2003 to 155lbs in 2005) I have always been "fluffy" per say, and now I am somewhat "fluffy", but I am afraid it is the beginning of the side effects from the meds? My doctors assure me that this is not the case because the medicines I take do not usually cause wasting or the rearrangement of fat in the body. I think that maybe I am stressed out and that is what is causing me to loose weight. I still look normal, and my doctors' arent worried but I am, should I be?

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Anonymous
Unregistered

Re: Way out in left field new
      #139166 - 03/23/05 04:25 PM

Have you talked to your doc. about getting on ant depression drugs? They help me feel better. I have been + since 1996 and I am doing great. I did go through a time about three years ago where I wanted to be normal and not take any drugs and live my life the way others live, but reality smacked me in my face! I not like everyone else, and if I want to live I need to take care of myself the best way I can. It was plenty of times where I just felt like dying and giving up, but I have three little girls that depend on their mother and I will do everything in my power not to let them down. I loss my mother at 12 and it’s devastating, I don’t want my girls going through that. You have to think positive not just for you, but your children. My sister is the only one that knows about my condition and she’s a great support system. I wish you the best and please keep a positive attitude.

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Anonymous
Unregistered

Re: Way out in left field new
      #139167 - 03/23/05 04:29 PM

What drugs are you on? If it's helping you lose weight, then I need to get on those meds.

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: Way out in left field new
      #139169 - 03/23/05 04:35 PM

Well, i do know, more medications than others can cause lypodystraphy faster. and if you have only been on them for 8 months, (it could be) the azt in the medication getting you ill, and anemic, and maybe very pale. Are you sick to the point you can almost vomit?, or do? because that could be causing the drastic change in your weight. some of the other meds I told you about in place of the azt (the d4t) does cause weight changes. but regular excersize, (and for me it was TONS of sit ups..which I hate by the way), to help reduce the drastic change. Talk to your doctors, ask them if you had had a resistance (genotype, or phenotype) done. this will tell you if atleast the d4t will fight your type of hiv. then it will be okay to switch to that for a few months to give it a try. Please keep me posted. I know how awful it can feel to be sick from meds. I spent almost 380 days with my face (sorry to be gross) in the toilet all day. I was afraid to swich, but knew the trying it would be okay, especially if it worked...and it made a huge difference to me. remeber, get back to me on your opinions on the idea. Your in my prayers. Things will really work out.

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sweetpea9919
Master

Reged: 10/22/03
Posts: 140
Loc: Las Vegas, NV
Re: Way out in left field new
      #139185 - 03/24/05 12:27 AM

I can totally relate to your story. I have felt the despair, the depression, the hopelessness. Life is not over for you.

As you can see from the replies to your post, you are not alone. You'd be surprise how many of us there are out there! If you want to talk to someone, I'd be more than happy to lend an ear. Send me a private message.

Now... go out to your local drug store, grocery store, or book store. Buy April's issue of SELF magazine and turn to page 156. Read my story; you'll probably recognize yourself in my words.

Take care,
Erika

--------------------
Erika
Married; 31 years old
HIV+ 10 years... and counting


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Anonymous
Unregistered

Re: Way out in left field new
      #139191 - 03/24/05 09:51 AM

I don't feel sick, actually I feel very normal. It's just that my appetite is not what it used to be. I guess this is a good thing? I always ask my doctors tons of questions and they answer them. Maybe I'm just being paranoid. My doctors say that the weight loss is a good thing since I am only 5' 1".

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Anonymous
Unregistered

Re: Way out in left field new
      #139192 - 03/24/05 09:56 AM

I contemplated taking anti-depressants and the only thing with that is that I would also have to take pills to make me sleep, which I really don't want to do with 2 small children. Also being that I am already taking medication just to "live normally" I really didn't want my happiness to depend on medication. If it gets too bad, I hope I will have enough strength to admit defeat and go on anti-depressants. Thank you for your words of encouragement. All of this really means a lot to me.

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Anonymous
Unregistered

Re: Way out in left field new
      #139193 - 03/24/05 10:01 AM

I take combivir and sustiva, but I don't know if that is what is making me loose weight or stress.

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debtex
Legend

Reged: 03/21/05
Posts: 846
Re: Way out in left field new
      #139202 - 03/24/05 02:39 PM

I know people always say how great the weight loss thing is, but to a person with HIV, I know how badly you hate to hear it. Its good that the pills don't make you sick, and they seem to be working for your #'s. Yes, it is a big change in life, when did you test poz? You will feel isolated for a while,but as long as you keep reaching out and talking to others...I promise, things will start to feel like a normal life again. you are a great mom and you love your kids, and even if right now you are doing things just for them....that will keep your head-up, and you going in the right direction. and before you know it, you will not feel so alone w/ this. because there is ALOT of people like you (and I) in the world. Even if ..you find your best support is here...that will help bring some normalcy back to your mind.

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DaphneeLee
Unregistered

Re: Way out in left field new
      #139220 - 03/24/05 04:47 PM

I can completely identify with your apprehensions and worries. I am 46 now, been + since '88, left widowed with my neg. 1yr. old daughter. All my friends unfortunately shunned me as well as all my family execpt my parents. So until 94 when they died I was able to function "normally". After their death, I have spiraled down consistently into an abyss of lonliness, isolation and despair. On the surface for some years I did what I could to keep things OK for my daughter, but now she is 18 and although I know she loves me ever so much, she is unable to really be a part of my life. It is just a superficial, hi, bye, Love you. I will pray for you and your children that you will find the compassion and affection that you deserve so that you can remain strong for your family. I will pray that you find tangible love and acceptance to enable you to endure. I myself have done all the things all these posts have discussed with very grim results. I just am not able to connect with anyone myself other than writing these words. I am glad for all those + that are enlightened and uplifted with writing and words of encouragement, I wish I could be one them. I need a physical presence, a smile to share, arms to hold each other and shoulders that we can cry out our fears on, I feel only then will I find bits of strength to feel like living. I pray that those lucky enough to have this will see it's real potential. I wish we lived nearby and I could see and hug you. I wish I could share your pain.

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