POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: CHUCK610 on May 24, 2009, 02:56:00 pm
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I just found out May 1st I'm hiv poz, I'm confused, depressed, and can't seem to get it out of my head, i'm having a hard time sleeping, eating and just doing day to day things. My wife has been very supportive but now she is in the unknown of whether she has it or not. we wont find out until May 27th. I"m not familiar with this site and not sure how to communicate the correct way. I think this will post my own subject. I"m scared on how to handle this, what are the right foods, the correct meds am I with the right doctor, what it the appropriate exercise routine (i never exercise), I have tried to eat better when I can. I'm have nightmares that wake me up screaming.
Please help
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Hi Chuck
Welcome to the forums; sorry about the reason.
It can feel overwhelming when you first find out, but there are lots of resources around to help. And you don't need to take them all in at once.
First, sounds like you could use some human contact. Have you looked into local support groups? There is a search tool on this site that you can use to find an ASO (AIDS Services Organization) near to you by entering your zip code. Many of those organizations sponsor support groups for people with HIV where you can meet people in person. Or you could tell us a little more about where you live (I'm guessing from the "610" in your screen name that perhaps it's the Philadelphia suburbs?) and see if anyone has a recommendation. Here's the ASO finder link http://directory.poz.com/
Second, there is a series of very useful lessons on this site. They can answer a lot of the questions you may have. Here's a link https://www.poz.com/basics/hiv-basics
There's a lot to take in, but you have plenty of time to do so. And there's hundreds of thousands of other folks with HIV to talk -- once you find them.
Be well
Assurbanipal
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Hi CHUCK
I am glad you opened your own topic thread.
Andy gave you some great advice in the other thread - breath deeply and take it one day and one step at a time.
You have every right to feel everything and anything that you feel, and think, its normal, you've had a shock.
The next few days will be extra stressful, until your wife's results.
No matter the results, keep in touch here - there are people with a lot of information and experience.
For the time being, you do NOT have to worry about exercising, what to eat, etc, etc, all in due time.
When is your next appointment with the HIV doctor? Did anyone refer you to a psychologist or social worker.
If you are having troubles with obsessive fears and thinking about HIV - first its normal and second you can maybe talk to somebody and you could also ask any doctor (your generalist, your HIV doc, etc.) for something to help you sleep.
Sleep, and also keeping busy are important - just go through the motions, its fine.
In the other thread you posted your numbers, why not post them here again so people with good knowledge can put your mind at ease a bit.
I think you said you extremely low viral load. less than 20? Who gave that info to you, did you report it correctly, here? Just checking.
HIV medications are VERY effective. Did your doctor reassure you?
Knowledge is power and health and you took a good step by communicating here online and starting to learn about your diagnosis.
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I am located in Maryland 610 is my birthday, my cd4 level is 289 and my vl is over 20,000. My Hiv and general doctor both reassured me that I would live a long life. However, it so doesnt feel like it. I went to church this afternoon with my wife and then to a graduation party for a friends daughter. I had such a difficult time trying to enjoy it. I just feel like laying on the couch and doing nothing, I manly had these plans to keep my wife busy to take her mind off the not knowing her status we should have her results on tuesday. My next appt with the hiv doctor is on june 18th and thats when they will be putting me on medicine. I"m not sure which one.
I don't feel I hav anyone to talk to, my best friend is not there like I thought he would be, my parents are in denial, my brother and sisters are not sure of what to do.
Every bump, itch or any change in my body is just freaking me out. and I have no one to talk to. My wife has been great but she is smothering me, I haven't left my house except to got to work since I found out. I can't stop crying are feeling bad, I just don't know what to do
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you are not alone....i myself had all those feelings at the beginning....
what really helped me the most was being out in the world and seeing the world continue....
i saw people very differently after my diagnosis...i judged people every day and wondered what was going on in their lives....i thought.."could there be others going through the same thing as me and not be able to tell?"......hiv does change you....but dont let it take your life away....
it infected your body.....not your soul.....
you are a wonderful person...dont foget that....
you are gonna make it....just continue one day at a time....and continue to be out in the world...
cry if you have too...
one friend told me...."cry...if it takes 1hr...." "if you cry 59min the next day....eventually you want cry anymore..." everybody deals with this diagnosis differently....but we still go through all the same emotions....
try to educate yourself on all you can before june 18th....there is alot to learn about the drugs and lots of information out there to read....we are here for you to help you....you are not alone buddy...
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Hi Chuck
If you are near DC you might want to check out this group (they also list some other groups including ones in Maryland later down the page) http://hopedc.org/groups.html
And, picking a Baltimore zip code at random, the ASO directory lists 39 groups that have peer / group support services in a 50 mile radius (To search by service, click on the little blue + sign on the bottom of the directory search page)
As far as your numbers go, it actually looks like you caught things pretty much in time. While it is recommended that you start medication now that is primarily so that you don't get sick in the future. Right now it is pretty unlikely you will get sick in the near term so try not to stress out too much over every little bump or itch -- they are probably nothing out of the ordinary. But since it is helpful to do something, start a list of things to go over with the doctor at your appointment and put them on the list. Starting meds while you are still pretty healthy you are likely to have an easier time with them too -- so try not to stress over potential side effects; the healthier you are when you start, the less likely you are to get them.
It's all incredibly stressful right now, but honestly it does get better as you have time to adapt and to learn a little more about modern treatment.
Hope your wife gets a good (negative) result on her test.
Be well
A
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Chuck,
Welcome to the forum. I understand completely your emotional state is right now. I went through the same only 6 months ago and I too started my meds.
As others have said, time is the best cure. Try to learn as much as you can about HIV -- much of it is in the forum here.
If you need to talk, please PM me. I am her for you buddy!!!
My prayers are with you.
JayJax
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Today was the day we where suppose find out my wife's results. This is what the doctor said: The argus test came back negative(hope thats the right name) the western blot came back positive so they reran it and it came back positive again. Her cd4 is 1300 (that's not a typo) and the doctor said her vl is be on undetectable.
What is all this suppose to mean does she have it or not?
Doctor says she could be one of the rare cases where she has it but will never affect her. she would be just a carrier.
known of this makes any since to be I thought you had it or you didn't.
As for me I couldn't handle the stress of this and left work early to come home and get stoned. It seems to be the only thing that calmes me down anymore. Pills just put me to sleep, not that that would be a bad thing I'm not sleeping much anyway.
I started reading some of the medications and I am so confused on what will be right for me. My doctor is at Georgetown University Infectious Disease center. I have been hearing it is an excellent place to get treatment.
I am just so scared and have no one to talk to. I fell empty and alone.
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Hi Chuck
There's other people on here much more knowledgeable about testing than I, but this doesn't sound quite right somehow. Here's a link to the material in the lessons https://www.poz.com/basics/hiv-basics/hiv-testing Basically the Western Blot test is usually run only if the first test is positive. And the term "argus" is new to me ... but maybe this will make sense to someone else.
Did you get a copy of the results? If so maybe you could post some of the details.
Note, you may want to get in the habit of getting copies of all lab test results. Sometimes you need to change doctors or see multiple ones and they often do not coordinate well (to put it mildly).
Or you might want to ask for a retest or second opinion. Johns Hopkins in Baltimore has some renowned HIV specialists.
But fundamentally, despite the uncertainty it sounds like your wife is ok. That's got to be a huge burden off of you and her both. Sounds like a celebration is in order!
As far as looking at medications for you, the first step should be to ask your doctor what your genotype test showed. This test is standard of care these days, but still gets forgotten sometimes. It will show which medicines will likely be effective against your particular strain of HIV and whether it has evolved to be resistant to any drugs.
Once you know which drugs are effective it is a matter of tailoring the (many) choices to be:
- easiest to take,
- least likely to exacerbate other medical conditions you might have and
- fit into your life with the least rearrangement.
You might best spend time preparing to talk about the possible meds by compiling a personal and family medical history (including depression, blood pressure, heart disease, cholesterol) and thinking about whether you can schedule taking meds with or without food at a consistent time each day. Then you and the doctor can figure out what works best. Most people nowadays seem to start on Atripla, because it is once a day, but it may not be a good idea if you are subject to depression or have a wildly varying schedule.
Best wishes
A
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Hey chuck,
Just wanted to share my experience with the meds. After a month on the meds, I felt an improvement in my physical well being. As the weeks passed, I wheezed less and I played tennis longer and longer. I had night sweats during my acute syndrome. They stayed with me until my cd4 increased. That really made me feel better. I cried all the time. Still do but its not as intense as it was. If you are near DC get to a support group with your wife. She could probaby use the support too. Its sounds like you are lucky to have her love and support. Keep us up to date and I hope you get a good resolution for your wife.
Matt
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Well, sorry to hear of the positive result for your wife! But the results are strange. Hey, maybe if she is a total master controller of the HIV virus, thats amazing, good for you and her both!
Anyway, it does sound like she will be quite healthy and have not many physical problems ever with HIV. You, eventually, will be quite healthy with proper medical attention, which is what you are getting.
THe people you can talk to are: your doctors, your wife, people here online, and reach out to an aids-service organisation in your area.
Its good to learn about HAART but also you are in shock so you cant be expected to know too much too fast. If you trust your doctor, he/she will find the right combo to start, when it is time, and if that first one doesnt work, you will find another that does. trust in that.
By the way, call who ever tested your wife and get the right name of the test. Well - she can take control of that is well. Im sure she wants to know. Try to get a diagnosis that both of you can understand, because obviously you are still in the dark.
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well with the confusing results my wife and I went to the clinic she found out about and she had the quicktest takes 20 mnts done which came back negative. This test shows if there are any hiv antibodies in her blood. The people there said it is 99% accurate. The 3rd test from Georgetown University Hospital comes back tomorrow. She is going on the test today that she is negative. God I hope its the right result
I however am having a bad day today, I left work at noon and my wife and I went to the clinic had the test done on her. Then went and got something to eat and then to the movies "she actually let me pick the movie, I saw Star Trek again. It helped a little and it got me out of the house. Though still feeling down and confused about starting treatment.
Should I start treatment on the 18th of June or have them take another set of labs just to see where my numbers are, they have only taken one set of labs. I have been hearing both sides and reading about going on meds if your cd4 number is below 350 and mines 289. but thats only with one set of labs
Totally confused here
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Chuck,
One reason I wanted to go on meds sooner than later was to reduce the risk to my partner. Also, there have been studies which suggested to me that medication sooner after infection (within months) reduces replication in your body and conserves your immune system. that is one side. I will leave it to others to point out reasons for waiting which deserves your consideration.
Glad to hear that your wife is negative. Hope that eases your mind. Enjoy the good news.
Matt
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Chuck,
Matt is correct. You want to make an educated decision and listen to your doctors advice with all the options.
Protecting your immune system is critical and getting your VL to undetectable levels will probably be your first priority. Once the VL is under control, hopefully your immune system can heal.
Keep us posted.
JayJax
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Great about your wife's result!
From your original post it sounded like you had an idea when you were infected. If it was recent it probably makes sense to get another set of labs since the CD count tends to be depressed at first and then usually rebounds. But if it has been a few years, then probably less so (counts are a bit more stable and generally trending downward then, although any one measurement is only good +/- 30%).
Actually, though, getting a second set of labs need not get in the way of getting a prescription and getting all set up on what drugs to take. If your doctor is willing you don't have to do everything serially. You can have the discussion on what meds to start on, get a prescription etc. and talk about what the numbers on your labs should be in order to start or not and then get blood drawn (or a prescription for a lab test). The numbers should only take a week or so to come in.
But if your CD4 count has been around the 300's for a while, even though there is no huge rush, it is time to take control and start killing the virus.
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Well the test for my wife that was suppose to come back today is now tomorrow. I talked to our doctor and she doens't have much confidence in the test from the clinic. So now we still aren't absolutily sure what her status is.
My originial appt to go on meds was scheduled for June 18th. I talked to our doctor and rescheduled my appt for June 2. I'll will begin on meds then she said 3 different pills once a day. Guess thats not bad. I am sure hoping I don't have any side effects.. I have a very low tolerance for medications. I just didn't want to wait anylonger after reading up on how important is to stop the multiplying of the virus. Still very scared and unsure about my life. But maybe this is the first step I need to take.
Thank you all for your support and encouraging words it has meant a great deal
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I think she can feel pretty confident but if she doesn't, she should test til she does. Confidence is learned about HIV. You keep your head up and keep reaching out when you feel you need support.
Matt
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Hi Chuck~
I live in Maryland and I'm glad to hear you're at Georgetown. They are the best docs (I was born there, btw ;) ). You have a lot of info coming at you, but I agree that you should start treatment right away based on your numbers. I tested positive in 1993 and if it weren't for the meds, God knows what would've happened to me. Make sure you have a good, open relationship with your wife and doc and don't be afraid to ask questions! :) I'll check back later today to see what has transpired. Hang in there!
~ Cindy
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Hey, Chuch-
I'm new to these forums as well, and have been aware of my poz status for under a year, but your post gives me the urge to share. I sure know the feeling of your mind going 90 mph towards a thousand different directions.
I first found out that I was HIV+ by accident. Like you're feeling now, I became fearful that my life was over. But I was wrong about that, and I hope that you will be able to see that soon.
HIV has brought several changes to my life, some negative and some very positive. It's no fun think that I'm going to be on life-saving daily medication for the rest of my life. Feeling that I no longer have a choice about how healthy a lifestyle I need to have is also somewhat stressful. But the truth of the matter is that, since I was diagnosed, I have made so many positive changes to my lifestyle. And hopefully this brush with the idea of death will bring those changes to you as well.
HIV treatment is much different now than it was when it was first discovered - the stigma is the only thing that has stayed the same. It is no longer considered a death sentance; rather, HIV infection is viewed by health professionals as a chronic illness - think Krohn's or Diabetes, for example. It may not seem so right now, but if you allow yourself to go through the process of digesting the news of your diagnosis, and things are more certain regarding your wife's status, your life will go back to normal.
I'm glad you found your way here so promptly. I've only been aware of this web site for a few days, and have already found a bundle of good information. Keep reading and educating yourself.
Matt
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Hello Shypoz, Cindy, Matt, Assurbanipal,Jayjax, Matt, and Mecch
My wife's doctor has said they she believes she is negative, and that something else is causing a false positive. They are going to run other tests including a DNA to determine what it is. So that's the good news.
We are so relieved.
As for me, I am feeling pretty good about myself today. I feel alot better knowing I will be starting medication treatment on June 2 instead of June 18th, the waiting was just freaking me out thinking that this virus was continuing to replicate in my body. I got a really good nights sleep last night 12 hours to be exact (with the help of sleeping medicine). I'm even thinking of going out and getting my motorcycle today, which I have been putting off since my diagnosis. I took the safety course last September cause riding a motorcycle has been a dream of mine for a long time and I have decided I am not going to give up that dream. Plus i think it will make me feel better and happy.
Though I am only a month into my diagnosis, I know I have to look at my future and stop dwelling on the past, what has happened I can't change. I'm not saying I wont have a bad day from time to time. But, I know I can not keep feeling sad and depressed about my diagnosis. I can truly say that all of you have been a great help and inspiration to getting me to this point. This site has saved my life, 2 weeks ago I was contemplating suicide. But now I realize I have worked to hard to get to where I am to just give it all up. And it would not be fair to my family and friends nor to me.
I know this will change my life forever, I'm still scared about my future, but I am confident I have the support from you guys and my family and friends (which I consider you my friends) that will help me get through the rough times ahead as well as the good times.
Well, let me end this novel (sometimes I can get wordy) and go get a shower and shop for my motorcycle.
Thank you to all my friends
I will chat with you later
Chuck
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There is nothing more scary than this for a person . I have a blog u can check out www.copingwithhivhepc@blogspot.com There are links and suggestions for you . First of all find some Dr's you can trust . Infectious disease Dr's . And of course a phycologist to talk some of this horror out .
I know I can now sit here and say everything will be ok , because it will you can make it ok!
Bright blessings!
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Chuck,
I'm glad to hear you're doing better and adjusting. Time is on your side now and will be the biggest healer. I'm glad to hear you're starting meds soon and your wife is not affected with the virus.
Keep us posted. Remember ... we're all here for each other. Don't be afraid to ask the questions or reach out for any help. Many of us have already been there.
Later
JayJax
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jayjax,
I had such a great day yesterday ,pickng my motorcyle out and all the excercies I wanted. I was so excited and just the happiest I've been in days.I got the best sleep last night Talked to some friends and family. It was great day
Today I have cried breifly, the feelings of being scared to take the medicine and scared not to take it. I am still having a hard time blocking out the sadness for more than a day or 2. Some are suggesting i go into a support group, some with a psychiatrist. Neither has really been the way I handle things. I've always dealt with it and figured it out myself. But now my emotions are telling me where to go and I can't keep them at bay. I'm trying to figure this whole thing out and just get more confused and lonely
How can a type A personality can change his obsessive behavier and wanting to be in control, My best Friend told me once "control what you have control over and leave the rest to take care of themselves"
What hell is that suppose to mean.
I think I'm at scared and confused
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Hi Chuck~
You know that what you're going through is a normal reaction to stress -- and this is a whopper. I know how overwhelmed you must feel, but the fact that you are reaching out and not sitting idle is a good thing. Its so early in your diagnosis so of course you're going to be confused. The biggest problem I always had was fear of the unknown, but in time those fears could seem smaller.
I am happy to hear that you're starting meds and I know that tomorrow is a big day for you. Please let us know how you're doing. I think you're doing the right thing, that's my take on it.....and as far as a therapist or a support group, you have all of us right here to turn to.
Your Maryland Neighbor,
Cindy :)
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Cindy,
My ID doctor told me about this site and I have to tell you she was right ,I have gotten so much support, I wish Ihad known about it the first week of my diagnosis.
yeah tomorrow i start meds that I will have to have a discipline to take every day at the same time for the rest of my life..thats what fears me..suppose I mess up and miss a dose. trying to figure out the right time to take them. is the most confusing part. But I guess I will figure it out.
For now this forum is the only group therapy and support I need. It has been very helpful
Thanks to all of you
Well wish me luck tomorrow.
DAMN
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Hi Chuck~
If you're comfortable sharing what meds you're going to start, I'm sure there are many of us here who can share our stories about what to expect. Personally, I am on Sustiva (since 2002) and Truvada (since 2005) and I may switch to Atripla next month (combo drug with the same meds in it). I am losing my MADAP coverage because I moved in with my BF, so I have to start paying copays, so of course one med is cheaper.
Let us know how it goes. I think you'll be just fine, and if for some reason you're not, remember there are so many other regimens your doc can try with you, as far as meds go. :)
~ Cindy
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Well I made the trip to my ID doctor and she faxed the prescriptions into my pharmacy, which had to order it so I don't start until tomorrow. The ID doc put me on 3 different meds Reyatax 300mg, Norvir 100 mg, Truvada 200-300 mg. I will be taken all 3 once a day, guess thats not bad. I sure hope I don't have any of the side effects associated with these. Now that I'm not starting until tomorrow, my wife and I are going to dinner and some drinks tonight. The doc said I should not drink anything for it least the first 2 weeks I am on them. She said I could wait another 3 weeks if I wanted to start on meds, but I just thought about it and all that I have read, I want to start now, so there is no further damage to my immune system.
I'm feeling a bit down today, I could have gone back to work, but just didn't feel like it. I so need to get back out of this funk I'm in
When do you feel normal again?
Chuck
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When do you feel normal again?
Chuck
It takes some time, but it happens. When I was first diagnosed, there wasn't a day that went by when I didn't think about 'this thing that was happening to me'. But it does get better.
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I know I have only known for 5 weeks that I have this, but it already seems like months. Each day I feel a little better then I get sad and cry a little, then I try to do the things I used to do and it helps some.
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I think you are handling this so well Chuck. Keeping up with going out and normal activities is key. I often feel like the tennis court is the only place I forget myself completely. I have been playing 5-6 days a week just to do something healthy. So get out on your new bike and let loose. Good to hear that you are making progress.
Matt
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so tell us about starting the drugs....you will feel normal again soon...in may be months away...but its coming...just focus on taking the medicine and thinking about your future...it never changed...
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Well today was the first dose of the medicine, I feel pretty good about it. Not sure of how long it will take for any if any side effects. But so far I don't notice anything, could be I'm just so tired, havent slept in 2 days stopped taking the sleeping medicine. Wanted to try in sleep without it, but that didnt work. So I took it tonight.
I sent my wife to bingo, she really wanted to stay home with this being my first night on the meds in case of a reaction. But she has been so great through this and hadn't been out with her friends so I told her to go. However, she had my best friend come over and have dinner with me and stay with me for a while. He just left, he's been real helpful with keeping my mind off it.
Talked to the Harley dealer today, still hoping my motorcyle will be here tomorrow..I'm so siked, can't wait to ride. I think thats helping me keep focused.
You guys have been great on giving me positive feed back and encouragement, it has helped alot. Haven't cried for about 3 days now.
I hope I can get to the level of giving support, like you guys have given to me.
Talk to you again soon
Thanks again
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Hey Chuck, sorry for that diagnosis, i found out that I was Positive on November 2008, months have passed and im still scared, everyday i remember I have this stupid virus, everyday I think what will be my future, what will be of me, and it makes me sad so sad, but we really need to be strong, we are still breathing and we still can fight this, so we cannot waste our time depressing we must take the time that we have to have as much fun as possible, do that, im trying to do the same.
I believe we are going to die, very very old ;) just be strong.
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Hey lusopt
Thank you for your encouragement, I am trying to be strong, its tough. At least today I got some good news. My wifes test all came back negative at least I didn't give this virus to her. It was such a relief to hear that she was fine. She has been supportive during this whole thing. She is so much stronger than I thought.
Though with this great news, and after taking my second dosing of the meds, I feel so sad and alone. I have been thinking now that she doesn't have it she would have such a better life without me. Today, I'm not having a very good day. I can't seem to snap out of it. I put on an act at work all day and when I got home so Know one would think anything was wrong. I thought I was doing so much better and started to accept this. But right now I just don't want to be alive.
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Chuck, you've got to give yourself a break. You just found out you're HIV+ and expect to have a chipper attitude all the time? Come on. What you're going through is completely normal. And it will probably continue to be up and down for, oh at least the first year. But, it does get better, trust me.
You may want to try to get ahold of your local ASO (Aids Service Organization). They have people there who are trained to listen and help us pozzies. They can put you in touch, if need be, with a good therapist who deals with HIV+ people, and in case you feel you may need a support group, so you can meet face-to-face other people in this same boat.
How's riding that Harley going? I used to bartender for the Hell's Henchman, so I've had a few "good vibrations" between my legs before (sorry to be graphic). Anyway, things will work out. Just keep coming back and let us know how you're doing.
Luv,
Betty
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well the harley came in but the accessory parts aren't in yet. so hopefully wendesday, but there calling for thunderstorms. so who know when i will be able to ride it.
I've been scared to plan anything in the evening based on when I have to take my meds and the effect they are having on me. plus one of the the Norvine has to be refrigerated.
Anyone have any suggestions, I really am trying to get out of the house but it scares me. I just go to work and come home. make me a well balanced dinner and take my 3 meds half way through it. I'm hoping this is keeping the nausea at bay.
Any help or advice is greatly appreciated
I'm still so lost and want to find my way.
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Stay in the house to get your head around it but schedule some time to get out regardless of your meds schedule. You have to keep that positive frame of mind that you wrote with in your past posts. That will be a lifesaver for you.
But don't get on yourself for having bad days. Its early and you will still have them occasionally.
Matt
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Chuck, do you have a garden? I find that gardening is one of the best stress-relievers going.
And I'm soooo jealous of your Harley! I had a Yamaha 500 one-lung for a season years ago, (like nearly 30 years ago!) and I absolutely loved it. I expect to see photos!
You'll be ok. Give yourself time.
Hugs,
Ann
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Well, I'm on day 5 of taking the meds, the only side effects thus far is dizziness and fatigue.
I am trying to eat better but haven't really gotten to the exercising part. Also, have a hard time trying to quit smoking. I know i need too but its my only vice. I haven't had a glass of wine and 6 days. The ID doc told me to stop drinking for a while. My next appt is June 25th.
My bike is suppose to come in on wednesday which is also my birthday. I don't really feel much like celibrating it. Dont know if the bike will even cheer me up. I wish I had someone in my situation to talk to face to face. My family and friends I think are now at the point of not wanting to talk about it.
where do i go from here? I'm feeling very alone
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Can your ID doctor suggest someone in your area for you? I was very lucky to know someone HIV+ >20years upon my diagnosis. I basically lived on a blowup bed in his living room for 2 weeks when I found out. LOL. I thought I had it ruff until he told me his horror stories from the 1980s. We are very lucky today. Just remember you have this website to turn to. There is always someone around. You will never be alone. Celebrate your birthday. Focus on your new future. Time will heal your soul. Its ok to feel everything you are feeling. One day....you are going to wake up and say...."wow...I wasted alot of time worrying for nothing." That day will come...I promise. Just continue to surround yourself with positive attitude people. Please stop focusing on the negative things about HIV. Remember its only a disease. Dont let it overtake you. Your friend...
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Hi Chuck~
Sorry you're feeling down, but you seem to be tolerating the meds a little better. You'll learn better how your body reacts to the dizziness as you try the meds with different foods. Have you looked at the drug details on the website here? There's lots of info there which may be helpful.
I am also diabetic and I always carry a little cooler with me to work to keep food and meds in. So, if you're concerned about the Norvir, get a small cooler to keep with you. Its a small price to pay and you can just tell people you're keeping water and sodas with you if they get nosey. My point is, always take your meds, so always have them with you, even if you're out. The nurse at the local support group gave me a key ring with a tiny case on it, about the size of a tater tot (lol) that has a screw-off cap. I always keep a days' supply of meds in it and carry it with me. That way if I'm somewhere late or unexpectedly, I have my meds for the evening. Its good in case of an emergency.
You know I'm close by. I can certainly give you the name of a wonderful person at the local health department who might be able to assist you. The only problem is, is that they cater to those in need first, meaning if you don't have insurance you get first dibs. I'm thinking you have insurance. Even so, this lady is a great resource. She also runs the local support group.
Also, for years I didn't know I qualified for MADAP. (Maryland AIDS Drus Assistance Program). They can help pick up the copays for your prescriptions. Your regular insurance covers the bulk of the cost and then MADAP picks up the $40 copay (or however much) for a 30-day supply. They also cover other meds for cholesterol and diabetes, etc. You just have to make sure you don't earn too much income for your household, but they are pretty generous with the amounts.
I'm happy that you have a Harley to look forward to this week. My BF has a Dyna Super Glide and no cars go into the garage, just the bike. ;)
I hope you feel better, but give yourself time, its going to take a little while.
Happy Birthday to you, all the same! :D
~ Cindy
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The nurse at the local support group gave me a key ring with a tiny case on it, about the size of a tater tot (lol) that has a screw-off cap. I always keep a days' supply of meds in it and carry it with me. That way if I'm somewhere late or unexpectedly, I have my meds for the evening. Its good in case of an emergency.
You can get single-dose med-container keychains in most drug stores. I've seen them at Walgreens and CVS, as well as the pharmacy section of Kroger and Wal-mart. They are pretty inexpensive too. Like Cindy, I always keep a day's dose of my medication with me at all times, in case of emergency.
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Hi Chuck
Hope you have a happy birthday and a good run on the bike. Some days, especially when you are just getting used to HIV, its hard to think about anything else.
But honestly, it does get easier over time.
A
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Happy Birthday Chuck
Hope you are having a good day! Enjoy your Harley
Matt
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Hi Chuck,
Sorry that we've been getting this crappy weather. I was hiding in my basement earlier, lol.
Saturday is supposed to be nice. ;D Hopefully you'll get to ride that HD!
Happy Birthday!
~ Cindy
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Thanks everyone for your Birthday wishes, I appreciate it..Still haven't gotten the motorcycle yet. There still waiting for the seat to come in which is suppose to be here tomorrow. So, hopefully I will have the bike on Friday for the weekend.
The meds are still causing me some dizziness and tiredness, but its only been day 7.
I am going to look into to getting the one dose casing. I have already purchased a cooler to keep my meds in but have not taken them with me. I've just been coming home after work and I take them between 7 and 7:30 every night. Haven't really gotten to the point where I am comfortable venturing out yet. I do small trips. I ran some erronds on sunday that totally wore me out. I don't know why but I just get very tired these days.
Thanks for your support
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Give your body and mind some time to adjust to meds and HIV. It took me a while to get over fatigue. I still don't know exactly what it was. My acute syndrome knocked me on my ass, then diagnosis, then meds. So I was never sure what made me tired, but I did adjust back toward normal. You probably will too.
We are getting cloudy weather up here. Hopefully, you will be all set to enjoy your bike this weekend.
Take care
Matt
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The fatigue is really getting to me..suppose to pick up my bike tomorrow, I'm hoping I'm not so tired this weekend I don't have the energy to ride it. Don't know what the weather here is suppose to be like. Its been raining like forever. Wonder if thats parts of my fatigue to.
I just want to really be myself again, but just can't seem to get there.
Hope everyone has a good weekend
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Yea its been raining here forever too. I am off to P'town on Cape Cod this weekend and it is looking like more of the same weather wise. Rain today and completely overcast after that. It would be nice to see the sun again. See if the next sunny day brightens up your mood. Have you told your doc about the fatigue? It might be a short term side effect. Are you still going to see a therapist at some point? At the very least try going to a support group. My support group is not sad stories at all. It is almost all people talking about the good things going on in their lives with a whole lot of practical advice about meds, programs, side effects and all the issues you could possibly go through. Whatever it is you are going through, they have been there.
Fatigue sucks. Its hard to settle into that when you are used to being active. Here's to a better weekend.
Matt
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Hello everyone,
I talked to the medication specialist and she said it was probably the adivan that was causing my fatigue. She suggested cutting in half if I'm still having trouble sleeping so thats what I did last night. This morning I feel pretty good, I'm going in a little bit to pick up my motorcycle. I know today is going to be a good day. I've been taking the meds for 9 days now, so I think my body is starting to adjust to them. The dizziness and tiredness is not as bad as it was before.
Have a Great Weekend
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I have been reading your thread and wanted to say Happy Birthday! I hope you enjoy your new HD, I really miss riding with my husband, he passed away last year and being alone is a whole new experience. It has really been a struggle to keep a happy attitude but I realized I needed to go on and be happy. Enjoy your bike and ride with the wind!
Mary
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Hi Chuck~
I hope everything went well and you got the bike! Right now the weather is gorgeous, so I hope you're out and about getting bugs in your teeth! Enjoy yourself!
~ Cindy
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Hi Everyone,
Sorry I havent checked in in a while, been enjoying my motorcycle and just trying to get my life back to some normality, The side effects of the meds have been subsiding, which is good. I am feeling a bit better about myself and my future. I go next week to have my numbers redone to see if the meds are helping (god I hope they are).
Missy I am sorry to hear about your loss. My thoughts and prayers are with you. Hang in there and keep looking forward.
Have a Great Day
Happy Fathers Day to all fathers out there
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Hi Everyone,
Just thought I would let everyone know how I am doing.
Been really enjoying my motorcycle. Feeling real good these days, had the blood work done now that I have been on meds for 4 weeks now. should get the results next week.
My wife and I are doing really good, we have decided to downsize our house and we are putting it on the market this week and looking for something smaller. We really don't want to be tied down to this big house anymore. We want to start enjoying life. So wish us luck on selling it,
I want you all to know how much your support has meant to me over the last 2 months. It has really helped me move on. My thoughts are obsessed as much with the HIV. Though I still think about it and get sad now and then but overall I am doing great and just enjoying life and doing what ever I have to do to stay healthy physically and mentally. ( The motorcycle is really helping).
Have a Great weekend
Many Thanks
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That is great to hear Chuck. You are an inspiration to me. I am glad the Eastern seaboard let out the sun for you for a few days now and then so u can enjoy your hog. Be well and enjoy life. Matt
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Glad to hear all is well with you. Time helps and you will adjust to the meds. Rubber side down! Ride with the wind. ~Mary from Maryland
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Hello All my Friends
Well I've planned my first trip away from home for 6 days this july 4th weekend, a little nervous about being so far away from home, the wife and I are going to the beach. What makes me nervous are the meds and the timing that they have to be taken. I have purchased a small cooler to keep them in. Really hope it goes well.
On another note. I am so going to miss my motorcycle, can't take it with me don't have a trailer for it and to far of a ride just yet. I'm going to go through serious withdrawals to not be able to ride for so long. But hey thats apart of moving on with life. Dont you think?
I hope everyone has a great 4th
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I just came back from the beach. I had a wonderful time and I am sure you will too. Enjoy and have a happy 4th. ~ Mary
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Thanks Mary
I am going to do my best
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hi chuck just sending u a huge hug here from the uk and sorry ur head is up ur ass at the mo but it will come down at some point and u will carry on with ur life like it is normal and u will forget that the hiv is there , I myself have been poz 23yrs and like u at first idint know what to do where to run anD DINT KNOW what was goin to happen well what is goin to happen is u and ur wife will get ur both heads together and say know what flick it we are goin to live our lifes to the best we can and enjoy every day we wake up and hug each other and love each other and thank god that ur are still alive dont forget that we can live with all these new meds for yrs now and mind over matter TRY AND STAY STRONG i know it hard but ur alive . QUOTE !!!! LIVE LIFE LIKE UR DYEING AND LOVE LIKE U HAVE NEVR LOVED BEFORE xxxx
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Chuck,
I am glad you are getting things worked out. I know the initial diagnosis is very traumatic to you. That is a very normal reaction. Find support as all the other posters have advised. This forum is a great start for support. Prayers healing and support are going out for you.
Smalltown66
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Hello Chuck, You said your wife had positive western blot, and later she tested negative on others tests? I tested positive on elissa and wb on 17 jul (this friday). I had no risky exposures in my life. I had sex only 3 times in my life (i am 27 years), and all 100% protected and no failures. I received oral from my ex-gf about 2 months back. Later i develped sore throat and ulcers on tonsils. They went off in 2 weeks. My doctor asked me about my hiv risk exposures and based on what I described he said no tests required. But I just had it tested as a routine, and got biggest shocker of my life. I have cried relentlessly for hours during the weekend.
Is it really possible to have a false positive on WB? my doctor says NO. He anyways is doing that again, but results won't be back until 2 weeks. I feel doomed and cheated by life.