POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: tsw923 on October 11, 2006, 10:44:45 pm
-
I found and read this website today and decided to post because I just need to get it off my chest.
In August I was really sick with a stomach virus. As is usual with me, what lasted for 2 or 3 days for other folks stretched into a week for me. I went to the doctor because I was just unable to keep anything down. My health had been going downhill for the last several years (bouts with mono, tonsillitis, and most recently shingles) so I figured I'd better be more cautious. My doctor assured me that I had a stomach virus that was aggravated by my occasional bouts with acid reflux. However, when I still wasn’t feeling better after the prevacid, he took blood tests. The results alarmed him so much that he called me back to the office to 'discuss' them. He wanted me to take some additional tests because of protein counts, etc. and that the possible reasons for this could be bone marrow cancer or HIV. I was alarmed, but I agreed to the tests. Well of course it couldn't be HIV because I'm not promiscuous, a drug user, etc so forth. I was a bit nervous because of some things that I had found out about my ex-boyfriend, but the relationship had ended over a year ago, so I figured I was safe. Fast forward to mid August, I get a call from my doctor during the middle of a conference call for work, good news, I don't have bone marrow cancer. Bad news, my HIV test was positive. He asked that I get additional blood tests that same week. I'm not sure how I finished the conference call, but I sat at my dining room table and cried and cried and cried. My sister came home from work and I told her and then cried some more.
I took more time off from work and took additional blood tests. I filled out a sheet of paper and felt every conspiracy theory about the government knowing all about me come to life. Anyway, the tests came back and the original diagnosis was confirmed and my cd4 level was 145 and my viral load was <40,000. I met with my doctor again. My sister came with me this time. I got my first meds, Bactrim, to ward off PCP. I demanded to know how this could have been missed. In the past 3 years I'd had mono, had a tonsillectomy and a UPPP, and shingles. I'd done a heck of a lot of blood work. My doctor said that never had this series of blood tests been done together and that's what pointed to the problem. I didn't fit the profile of someone with HIV so the test wasn't done as a precaution. Basically, if I had not insisted on seeing him about my stomach virus I probably would have landed up in the hospital with PCP before someone realized what was going on. So I asked him if he could tell when and how long I'd had HIV. After all, my health had been going down slowly, but I've been traveling for work for about 9 years so I figured that constant flying, etc was just wearing me down. And, if my ex had given it to me, well it would be just one more unexpected and particularly enduring parting gift. My doctor seemed to think that I'd perhaps gotten HIV in my mid 20's; so I'd had it a long time but for whatever reason I'd been able to go without medication. He did not think it was a recent infection from the ex.
So on my 37th birthday I began my first dose of meds, Sustiva and Truvada. So far the only side effects have been that I get really, really sleepy after taking it. And even that's beginning to subside as I get through my first month of medication. Aside from my sister and one really, really good friend, I haven't told anyone. I'm sure I should call the ex, but I just can't bring myself to do it. I want to tell my parents -- we have a great relationship and I really need a hug from my mom. But my Dad just finished up his chemo and my mom is stressed about that. And I love her, but I know she will worry constantly every time I sneeze or say I'm tired.
Anyway, I can count my blessings. This was caught before I got any really serious illness. I'm not pregnant. I have healthcare. Believe me when I tell you I thanked God for that mightily when I saw the insurance co-pays for my meds. My sister and my girlfriend have been really good to me. They don't let me mope around too much. I was able to take 2 weeks off this month for vacation (I'm really just starting to deal with this now). Today my dad and I painted the hallway in my house. I'm blessed to be able to spend more time with him after the cancer.
But here's the thing, I'm still scared. Sometimes I lay in bed and wonder how I'll even be able to let someone lay next to me again without feeling like I'll get him sick too. And of course, that's assuming he doesn't run screaming in the other direction after I tell him I'm positive. I'll have to tell my family eventually and I don't want to see them thinking 'Damn, we thought she was the good one'.
Sorry this is so long. I just had to say it to a group of people that probably get this more than my sister or my friend does.
-
I'll have to tell my family eventually and I don't want to see them thinking 'Damn, we thought she was the good one'.
Hi tsw923 - what i'm about to say happens a lot and i hope it happens for you: people might think that ( 'Damn, we thought she was the good one') for like 5 seconds then they quickly chuck that and get to what's important - today and tomorrow (not yesterday) ... we're here for you. i would say being scared is part of the equation for many here so you're not alone in that department. glad to hear about your health insurance. :)
-
Hey, there. I just signed up yesterday, but I have read a lot of posts on here. It seems that you've come to the right place for support. I still have to do a lot of reading on the meds (and it seems to be more reading than I can handle at one sitting, right now), but the meds work wonders from what I understand (I'm starting AZT soon, to keep HIV from passing to my baby).
I know it's scary to think about dating people, but I've read about many couples who have either met knowing that both of them are HIV+, or couples who one has "it", and the other doesn't. They even have a personals section on here. If you're single, and scared of passing on the virus, I would suggest starting there. You never know what you will find.
Disclose your status to your ex when you're ready. I did it immediately, but I'm not really scared, yet. It doesn't even feel like it's real, to be honest. At some point, though, I think that your ex needs to know, however hard it may be to tell him. Do it when you're ready, though. :)
I'm sorry you're here, but it's good that you are. This seems to be a strong support network.
I hope that you can eventually work past the fear. I'm here for you.
-
Thanks for the support everyone.
I have been reading through this site off and on last night and today and I have to say i think I finally found some of what I'm looking for, a group of people that are living with HIV day to day and providing information and some laughter along the way. I acutally went to bed feeling a lot better than I have in awhile.
I'll let you know when I tell the family and the ex. I don't want to drag it out too much longer. I kind of feel like I can't really start moving onward until I do it. Other than that I'm focusing on taking my meds and staying as healthy as possible. The funny thing is that my resolution for 2006 was to get in shape so I'd been working out and eating much healthier before all this happened anyway. Just one more reason to keep at it. :)
HHJ you make a good point about relationships. I've seen posts by married couples and seen the personals site. It is very encouraging to know there is still intimacy after testing positive. I think I've got to work through some things for me first before I jump into the pool again.
Thanks again.
-
Hey TSW,
I am sorry you have had this turn of events. To put it plainly, it sucks. But, I am very glad you have come here and joined in.
This is a great place, full of incredible people (and nuts like me :D) Please, make yourself at home, ask any questions you may have, read up on the lessons here, they are really informative, rant, rave, cry, laugh, whatever you wish to do.
We are a family, albeit a cyber one, and the support I have found here is incredible.
You are a classic example of why I believe everyone should be tested. You weren't tested because you didn't fit into a "high risk" group.
Damn stupidity.
But I am glad you have accessed medical care and are taking steps to maintain/improve your health.
As far as relationships go, dating will come in good time. First, get used to this new chapter in your life.
I'm no expert, but I have managed to live more than 21 years with this bug. There is life after becoming positive and it can be rich and full. Mine has and continues to be.
What's more, I learn something new every day, even when I don't want to. ;)
So, stick around and make yourself at home. You're among family now.
HUGS,
Mark
-
I just read your post. Your situation sounds eerily similar to mine, it made me burst into tears.
I just found out about my status on Monday. I figured it was my ex that cheated, but he came back negative. So ... I somehow managed to become infected despite the fact that I ALWAYS used condoms and I have had relatively few partners. I know it does not matter how this happened, but that it has. Still, I would really like to know how long this has been going on. I had meningitis a few years ago, and am now thinking that must have been the start. I had always thought that they had tested me for HIV during my hospital stay .. how could they not ? But they didn't and now I will never know how this happened, only that it has. The denial is difficult to move past, I will get my viral loads and the rest of the bloodwork Monday. I'm just trying to take care of myself until Monday and then figure out how to proceed based on the bloodwork.
I share many of your fears. I cannot tell my parents, even though I need them desperately right now. I want to tell my brother even more, I know he could give me good advice on medicine, etc ... but I just cannot bring myself to call him. I'm also dealing with heartache of losing the relationship with a man I was madly in love with just a few days before the unexpected diagnosis. I'm still heartbroken, and had been hoping before all this happened that he and I would reconcile, but that is impossible now. Heartache seems like a very small emotion right now, but I am scared I will never have a life partner now. Between the heartache, the grief, the loneliness, and the fear, I am not sure what to do. I have a therapy appointment in two hours. I have never seen a therapist but it seems like a good place to start.
Reading this forum is difficult because I identify with so much of what people are feeling. At the same time, it brings me much comfort in a very difficult time. thank you.
-
i know how you feel.... i have been sick for nearly 4 yrs and no one could figure out what was wrong until I started complaining of headaches.......
my first response what the hell have I done to my family and my children???????
My vial oad in Sept 06 ( when diagnosised) was 70,400 CD4 276 within two weeks of more blood work it went to VL 69,000 and CD4 206..... started Atripla ( good insurance!!!!) and feel better than I have in years.... but still need to know the why's and how's.......
-
Mark,
Thanks for your words of encouragement :) It does really help right now to know that this is not just survivable, but liveable. I completely agree with you, everyone should be tested or at least OFFERED the ability to be tested when they do their annual checkups. Its just ridiculous that something that can be so life changing isn't tested on a more regular basis.
I will probably go easy on the relationship thing for awhile. Although I have 'needs' ;D and I've been a really good girl for almost 2 years, I start thinking about how to relate status and get stuck in the fear-anger loop. I have to tell myself I've just been dealing with this for maybe 2 months and cut myself some slack I think. So cold showers for me while I get myself together on that.
srmn98 and mlm --
I swear I thought it was just me. I was the running joke amongst my friends. 'Oh well she is sick again. I guess she'll be out of work for a week :-P' They'd tease me about getting childhood illnesses in my 30s. I'd just say that it meant that I was aging VERY slowly. :-P I honestly just thought I was run-down due to travelling all the time. I really want to know when and how myself, but the reality is that the 'milk is spilt' now so we have to deal with the results. I doubt I even have the number of the guy I was dating 11 years ago. So I couldn't even go find him and deal him bodily harm if I wanted to :-P Besides, I was there too so I can't get too ticked with him for not doing something that I didn't force the issue on myself.
srmn98, I really feel your pain. I don't know much, but you can definitely reach me if you need to vent. I have to say it probably took about a month to really sink in and in the meantime I just tried to go to work and go about my daily routine. If you are seeing a therapist, let me know how it goes. I've considered it briefly, but haven't done much about it yet. You may actually try to get a poz mentor. I think that might help too. The next few weeks are going to be tough and you'll get information overload on medications, alternatives, etc. Get a notebook and write down all your questions. Get copies of your test results from your doc and store them someplace. And, if you can find the strength to tell your brother, tell him. I know being able to talk to my sister has helped a lot. It will definitely help to have at least one physically present shoulder to cry on.
Ty
-
This kind of issue is why I believe that all adults should be tested regularly.
-
You know, the thing is this: If you're having sex, I guess you're at risk. I was worried about it about a year ago before I got married, but I've always been a known hypochondriac. My doctor said that HIV was harder to contract, and that I should be more worried about PID or Hep C. That's why I procrastinated on getting tested. HIV was one of those things that could happen to someone else, but not me. That was how I thought about it, and eventually, pushed the fear from my mind. I didn't have any physical symptoms at all, and I really didn't fit into a "high risk" group. I was a bit promiscuous in high school and college, but since I became an adult, I was fairly choosy about my partners. If you read surveys, they say that HIV is more of a common place with low-mid class society and homosexual men. It's almost as if they are trying to make your fears obsolete. I think surveys like that are complete and utter crap, now. If you're having sex, you're at risk, because I can guarantee that I trusted every person I slept with since my last test, and trust just isn't enough, now.
You're still maintaining a sense of humor. That's awesome. I've read some about the meds, and they should keep you from getting sick (or as sick)... Keep your chin up. It seems that you're doing somewhat well with the news. :)
-
Thanks for your replies. This is the biggest challenge I have faced in my life, but in the end, it is just one more hurdle. Figuring all of this out will make us stronger, as it seems to have made many people on this board stronger. I am thankful for this online community, it is exactly what I have been looking for: a group of positive, educated, supportive folks.
tsw923 and HHJ1976 - any chance either of you would like to talk over IM ? I would really like to talk with some people in similar situations. It sounds like we are in similar situations and similar demographics. While I hope to draw and provide support from the entire community, your posts stuck out for me as people in a similar situation at a similar time.
thanks ...
-
HHJ -- as they say, 'The same thing that'll make you laugh will make you cry.' So I'm trying to go with the laughing thing now. :) I figure that if I start cyring I'll probably be curled up in a ball until tne end of November. And while that is appealing, the bills need to get paid. Unfortunately, while I 'won' the HIV lottery, I seem to be failing miserably at winning the megamillions so I've gotta keep moving. How are you doing? You seem to be really taking this in stride. :)
SRMN98 -- No problem with IM -- can we do it here? Otherwise, send me a message here with your here with your AIM and we can chat. I must warn you though, once I go back to work we will have to schedule time to chat. Hang in there -- and I'll check on Monday and give you whatever support you need.
Ty
-
tsw: You know, the beautiful part about being a lifelong cynic (and hypochondriac) is that while the news of being HIV+ is surprising, it's not totally shocking. At least, now, I don't have a "nameless disease". i don't know if the diagnosis is going to make the hypochondria better or worse, but I'm a little bit relieved to have been diagnosed with something (I sound like a flippin' lunatic, I know).
For some reason, I'm not afraid to tell people my status. I figure that if I get really sick with PCP, or something, they're going to figure it out, considering that healthy people with normal immune functions don't get that. I'm not afraid to talk about HIV. I've done plenty of reading within the past few days, and I have found that HIV, while holding a bit of a negative stigma, isn't the death sentence that it used to be with proper medical care.
In my diagnosis, I want people to know that they really cannot tell by looking at a person if they have HIV (or anything else, for that matter). If they don't know how they can and cannot contract it, I want to learn enough about it to teach them. I want them to know that "yes, it can happen to me", and that you can still be close friends with someone who has it without getting the virus, yourself. I'll be damned if I'm going to get something like this, and not do something about it. I don't consider the virus a "gift", but I'm going to make the best of the hand that I've been dealt.
srmn: Do we have messaging on here? Or would we have to go through our regular IM service (like yahoo, msn, or aol)?
-
HHJ --
You sound like an activist in the making :D I agree with you on many points. I have a cousin who is ill (not from HIV) who has kept it from everyone but me. Now she's in fear that an outpatient surgery could turn to inpatient and that everyone will find out. Before I found out about my status, I counselled her that she needs to tell her father because he shouldn't find out about her illness when he gets a call that she's been checked into the hospital. LOL -- Wow now the shoe is on the other foot. I will tell the 'rents, but I want to get another month of meds under my belt and hopefully another blood test that hopefully shows some improvement. Then we can sit down and have 'the talk'. What's more important for me is that I can try to convince my folks that I'm not going to keel over the very next day. So I have to have the information to lay out in front of them because they, like a lot of people, still think that HIV is the ultimate death sentence.
I was getting my hair braided at a salon where we watched Oprah last Friday and the introduction of the RED campaign. It was really ticking me off what some of the women were saying about people with HIV/AIDS. It never really occurred to me how ignorant we (notice I include me) all still are about HIV. Anyway, I found myself trying to defend without disclosing -- weird. That's why I know I've gotta tell my family -- don't want them reading about me in some newspaper somewhere...
Ty