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Taking charge of your life
#134820 - 02/23/05 11:04 AM
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hello
Lately i have been trying to coax myself into starting meds. I am not in the danger zone quite yet my t's flux btwn 300-400 and for the most part of feel fine. I have had symptoms in the past such as shingles and i have a slightly coated tongue which docs keep telling me is not thrush. Obviously thrush and shingles are words i hate. Fear makes me stand still. I am optimistic and never complain about my disease i just go with it, but i am scared of the meds. I read posts from people i guess hoping for some inspiration which i do get sometimes but other times i hear the meds are worse than the disease. I want to fight but not for nothing. Not for a few years of horrible side effects that won't let me leave the house. I don't expect this to be a cake walk. I got this by making a mistake as a teenage being naive thinking could never happen to me. I found out in 2003 after being monogamous for 4 yrs and planning to get married. He's a wonderful man and staid with me and truely believes i am stronger than this. I had some really great dreams. I am a constant goal setter. I finish with my ba in May, I bought a house in Nov, i was thinking about my future and hopefully having some beautiful babies with this man i love and to make them proud. Now i am not sure what to do with myself. I hear that hiv is not a death sentence, some will even go as far to say i will probally die of something else if i grad the bull by the horns now, because all sorts of different ways of combating the virus are in the pipeline. Some new pozzies i meet think if they can make it through the next 5 yrs without blowing through too many options or developing debilitating side effects they'll be able to sail smoothly until the next best thing. I want to live, but i need a goal to strive for it's just how i do it. I need to know that my wonderful husband won't be changing my diapers or something in five yrs. All this has me frozen in my tracks. How did you guys overcome these fears and move on.
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what can you do? either hide from the truth or start the meds. I too was scared about starting them hearing all the side effects and that but I realised I had to start taking them- the first week was uncomfortable -sustiva, viread and 3tc, feeling dizzy, sleepy, anxious but feel more or less fine now- I too hate taking tablets for anything and knowing these things are keeping you alive but also damaging your body is an odd thought - take them and hopefully you will be fine -either that or waste away and have your husband cleaning you diapers!! good luck you will be fine
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Thanks for listening. I just need to be confident everything will be okay.
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brian_n_htown
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I felt the way you do at first. Luckily my doc picked a regimine- Reyatax, Viread, and Videx- that I can keep up with and haven't had many side effects from. Find a doctor you trust that will take the time to figure out what will fit best with your lifestyle and give it a chance. Most of the new meds have far less side effects than the older ones and if you can't find anything you can take and still enjoy your life then you can stop taking them.Try not to let this disease cause you to give up on life. You never know what's around the next corner that can make the effort you put forth to live worth while. There's a lot of us dealing with the same issues and if we all support each other, nothing can beat us down for long.
LIve right, play well with others and try to remain grateful to something for the beauty in your life and everything else will take care of itself and you don't need to worry your pretty head about it ;-)
Brian Carter
briancarter@houston.rr.com
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Yours is actually the first post I'm responding to, mainly because you are feeling exactly like I was last year. I held out for about 4 years before my doctor convinced me to let the meds do their job. I was terrified of the side effects, I saw too many friends suffer. I also feared that I would be resistant. However, things really are different now. As it turns out, I'm worrying much less now than before the meds. I thought it was best to fight this without taking toxic meds but you know what, the meds make me feel like I was handed an uzi to continue the fight.
It wasn’t perfect at first, you and your doctor need to find the right combination. I didn't do well with Triziver and Tenofornir (got anemic) so my doctor put me on Reyataz, Truvada, and Norvir, which is a total of 4 pills in the morning. After 4 months my counts are great and I have had no side effects: none. Yes, we don't know the long term effects and no one can guarantee anything but the meds make me feel like I'm fighting this thing and winning. I think you may feel the same.
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Most people who are still healthy and start meds do not experience the debilitating effects that you speak of. I went on meds in May of 1997 when my t-cells were at 300 and my viral load at 30,000. I have remained healthy and asymptomatic since and have had very few side effects. I believe many of the "horror" stories" you are hearing are from or about people who already had very compromised immune systems and therefore their bodies were much more susceptible to all the possible side effects. It's normal to be scared to start taking the meds...I certainly was. But, I wanted to make sure that I STAYED healthy and asymptomatic. And, here I am, just about 8 years later and feeling fine, working every day, going on vacations, doing all the things normal, healthy people do. Your fears are real, but I believe that the reality is that if you do go on meds now or soon you will find side effects to be minimum to none since you are in such good health. Waiting will probably only make the possibility of them being severe a reality. Keep that immune system strong! I know it's psychologically hard to give in to take the meds, but, there's a time one should do it. Besides, look at the alternative. You'll be fine :)
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I once was like you. But finally my health got worse as i did not take medications. Medications now are much easier to take than even 2 yrs ago. I am on meds now, but let myself get my levels down to far and in all acutallty 300 400 tcells can fall fast. Be prepared for what could or could not happen. The best thing to do is to go to your doctor and tell him how you feel. Peace
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Thank everyone so much for listening. My t's were in Nov 365, so doc said i have a bit of time not much to find the strength to take the plung. I felt like i was being a baby for the last two yrs and i realize now that many others were also terrified. My husband thinks i am so crazy when i wake in the middle of the night of dreams of me and my fight with hiv, it makes me so made. I would love to know what everyone thinks about the news meds coming and will it improve our quality of life or increase our life expectancy. Has anyone ever started with less than 200 t cells and kicked this viruses butt.
stef
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I am absolutely blown away by your post. It seems like the same thing that happened to me. I drank too much in college and had sex with 4 girls 3 I did not know but this wont happen to me right?
Well it did. I am good now. My t-cells are actualy the same as yours. They have been for 3 years.
I wpould like to communicate with people like me but they are hard to find.
Nothing against gay people but its not the same.
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Steph
The biggest thing is not to listen to your doctor. All of the information is online and only you know your body. Put the time in and figure out what you need.
The drug companies make the drugs and the doctor tries to interpret this. The majority do not know. Don't gamble your life!
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hello anoymous
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Hello Anonymous
I thought when i was in highschool that as long as you didn't sleep with drug users or more than what you could count on your fingers, you were a good girl. Boy was that a crock of shit. My girlfriends don't fear hiv even though i have it. People don't get it. Everyone thinks it's just popping a few pills, if it were that you wouldn't know anything about side effects or people still dying. Where was the sex ed 10 yrs ago oh i forget heart came full throddle and we forgot about it for a bit. Actually i don't know why but i understand the frustration of having this virus. I have been so angry with myself for ruining my future but for some reason i just can't let it remain stagnent. I get up and work, go to school, and take care of my husband, pets, and house everyday. I think it's me being optimistic cus i just can't help it, the alternative is just too scarey. Noone except for my docs and some girlfriends on the opposite coast then me and my husband know of my condition, i have too much pride to even face it. I want to be a part of society is that so bad.
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Hello
I am responding to who said don't listen to the docs, damn that scares me even more because i truely don't understand everything. How do you deal with your virus. Do you tell your doc what drugs you want to take? You have me panicing again, doctors make me nervous to begin with.
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Anonymous-Linda
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You are right to have these feelings of anxiety. I have taken different combos over the last 8 years. I listen to my good doctors and read everything. Do lots of note comparing with people of simular backgrounds. I have never did drugs or smoke. I was in a very secure relationship for 5 years. My boyfriend pass this to me. He was "afraid". I have always had great health but, the meds have wreaked some havoc....I have had 2 bouts with anemia, pancreatitis, avascular necrosis causing a hip replacement. These are very real and valid issues. But, the meds have kept me very healthy and on track. I listen very closely to my body and write down daily issues to discuss with my doctor. You have to listen to your body and read the signs. Anytime you want to talk. let me know. I just had my thyroid removed, totally nothing to do with HIV!!! Anything is possible. Stay strong, live long.
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Jessie
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Guardian
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Reged: 06/15/04
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Posts: 395
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Dear Steph,
I dont know really what to say as far as your inner feelings go with overcoming the battle of knowing your HIV status and trying desperately to remain sane and continue on with you life as if nothing has happened or changed...I go through so many different emotional periods since my diagnosis with anger, sadness, loneliness, depression and then there are days were I feel I can go on, beat this virus and win!!!!!!
I know that having HIV is difficult, finding ways to express your concerns is hard BUT finding and talking to your Doctor is really super important especially since he/she wqill be monitoring you every two-three months and steering you in a direction that you will be able to live a full, happy and healthy life....I dont know who it was that replied not to listen to your doctor BUT that is not true...You DO have choices as wether or not to start meds...BUT you also have the right to ask questions, talk about your concerns and have your doctor answer all of these things BEFOR you make any desicions.
I understand your fear with starting the medications BUT they will save your life and keep you healthy for many years...maybe even by then, they will have new vaccines or meds that are less toxic to the body...the newer meds are less toxic as of now so that is a good thing!!!!!!!
Please try and relax a bit with the idea of starting meds BUT if you do decide, when the time comes to start meds, you need to make that commitment to stay with it so your body does not build a resistance to certain meds by starting and stoping treatment without doctors knowledge......ok?
Please try and keep yourself as stress free as possible, try and exercise (even if for 10 min 3 times a week) and eat healthy foods...your doctor can set up counseling if you are not already in it and they can have you meet with a nutritionist to discuss proper diet, foods to eat that are good for a healthy and strong immune system....
I wish you the best of luck and I know you will be fine....Be smart, educate yourself tons with professionals and you will be ok...God Bless Steph and have a woonderful life with your husband.......~Jessie~
HIV+ since 2-3-04
"While there is breath, there is hope".
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clilrichard
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Reged: 07/09/03
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Posts: 13
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Loc: EastTexas
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I Have read alot of these posts to you and I keep thinking damn, is my situation so bizarre. #1 I found out late so at least you know now and do have choices, #2 I already had a Oppurtunistic infection actually I had two I had thrush and Pnuemocystis pnuemonia my Tcells were down to 26 and more than likey I should have been in a hospital but didn't I went on antibiotics and I went on the meds. March of this year will be two years that I have been on meds and besides a occasional upset stomach I am fine. I have read all the horror stories too and yes it scared the hell out of me too, but don't let that stop you from having your own choice and decide what to do if you do have problems talk to your doctor there are ways to get around things that happen like a upset stomach etc... just take it easy and learn all you can so you can make the most wisest choice for you .
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