Dan88 - Still fed up.

[Dan88]

I know how you feel. I was diagnosed in November 2014 and sometimes I wonder when will this HIV crisis be over???!!!  I'm 28 years old but sometimes I feel like 80. My last CD4 count 3 months ago was 774 but I still feel very tired. I had a throat infection last month and I'm still coughing (I was tested for tuberculosis but the results were negative.) Sometimes I drool when I'm asleep and in the corner of my mouth I get a yeast infection. It's so effing annoying.  Last week I had a GI infection and I took Kaomycin for the first time in my life. That night I took my HIV pill and an hour later I started to feel high, had lots of weird thoughts and could't sleep all night long.

The worst part are the bad days. I stopped taking my antidepressants because my hiv treatment was giving me psychiatric adverse effects. I feel as if my depression were slowly coming back. I'm not suicidal but I can't help feeling sad for some reason. Sometimes I think about what would happen if I stopped taking my pills, I would be dead by the time I reached 36. Those are the kind of dark thoughts I have every once in a while.

Sometimes I thank God that I'm under treatment and that I don't have to worry about dying. But then the thought of having to take pills for the rest of my life makes me wanna punch someone, lol. Anyway, I never stop thinking about the positive side. Without HIV I might have never stopped smoking (it makes me nauseous with the HIV treatment, I haven't smoked in 8 months) or drinking (it makes me nauseous too, I must admit I was an alcoholic  ) I guess having HIV is better than having lung cancer or cirrhosis. 

Then I think about one of my bfs who might have infected me. We were together for 2 years. Looking back at it I think it was pretty obvious he infected me. The last year we were together I remember I had a very nasty lung infection. It made me feel AWFUL, I had chills, night sweats, nausea, etc. One day it got so bad I thought I was going to faint, we had to go to the doctor right away. I never felt like that before and we used to live/sleep together, so....  After my diagnosis he refused to get tested and we broke up. Sometimes I hate him A LOT and have bad thoughts about him. Sometimes I wish he got sick and someone would tell him he has AIDS. (Don't get me wrong, I recognize that it's entirely my fault that I got HIV, I'm not blaming my ex, I'm just hating on him lol.) I would never hurt him in real life but these thoughts make me feel like a bad person. Specially because we used to love each other so much. Ugh... 

I guess that's what living with HIV is like. Some days are good and some days are bad. Exercise was helping me a lot but I stopped because I started feeling apathetic. Now I'm trying self-hypnosis because it helped me forget about my ex. Maybe it will help me forget about HIV too. It's not like I think about HIV a lot though (betch doesn't own my life  ), just when I'm having a bad day. I'll brainwash myself into thinking I'm HIV negative lol. That'll probably help. End of rant. xD

[Jim Allen]

Hi Dan,

I have split your post as its more your own rant than related to the OP's concern and/of thread and i will reply to your post later. 

It will also give the other members an opportunity to reply to you without disturbing the other thread.

Jim

[Dan88]

Ok. I wish I could modify it now that it is a new thread. Maybe remove the "I know how you feel" at the start and change the name of the thread. 

[BT65]

Hi Dan,
This year will make 28 years for me since diagnosis, most likely 30 years since infection, if I trace it back.  I totally get what you are going through, but have to ask-are you on Atripla?  Because you say you have psychiatric side effects which Atripla is well known to cause.  I was wondering why you went off your antidepressant if the meds fueled your depression. 

Asking because I was once on Sustiva (before Atripla came out), which is the ingredient in Atripla known for causing psychiatric issues.  I have to switch due to the side effects, they were so disabling.  Of course if this is something you can live with, then so be it.  But if you are going through apathy and depression I would ask my doctor about a med change.

The rest of your feelings are completely understandable.  Everyone reacts differently to this.  I never had an issue with taking meds, other than the beginning when the meds were so bad (in '89).  Now I'm on 3 meds-Tivicay, Prezcobix and Edurant, which I tolerate very well.

How you're feeling about your ex is understandable as well. My first husband infected me but it was a long time ago so I've had a lot of time to get over it.  He died in '89 when I was in drug treatment, the same month I was diagnosed.  Ironically he is buried 3 minutes away from where I live and at first I used to go to his grave and yell at him.  Of course I forgave him, he was a chronic alcoholic/addict who never took care of his health.  I don't remember how long after diagnosis before I forgave him but it didn't take me long really.

I know it sucks.  However things are much better today than years ago.  You sound like you're coming out of the initial shock and all the feelings that go along with early diagnosis.  Don't give up, just keep moving it forward!

Betty

[CaveyUK]

Hi Dan, a lot of stuff there so will just make a couple of quick points

Firstly, whilst HIV meds will suppress the virus to undetectable levels, it doesn't sadly stop any of us getting other ailments or stuff that makes us ill. I know several people at work who (I assume, at least) don't have HIV but are always going down with colds, coughs, skin conditions and so on. It is so easy to apportion every single thing to HIV when you have been diagnosed, when in reality we still get all the nasties that everyone else is subjected to as well and quite often it is other stuff at the root of problems.

You seem to have done all the right things regarding lifestyle choices, and have a roaring CD4 count, so from an HIV perspective I would try putting that to the back of your mind a bit on the 'bad days'. Easy to say, I know. Whilst you claim apathy stopped you exercising, it can be a really good tool to raise spirits so maybe try to force yourself to get back in the habit?

Re the anti-depressants - if you are off these now and feel a slide back into depression you need to get some help in this area, even if it means working with your doctor to either get on an anti-depressant that won't interfere with your HIV meds, or change your HIV meds so they don't interfere with your anti-depressants.

Of course depression can manifest physical symptoms as well, especially tiredness.

I do feel for you, given the challenges you are facing, but believe that these are only temporary and try and see if you can get the 'bad days' down to ever dwindling numbers

[harleymc]

Hi Dan,
I hope you are feeling a bit better today. You certainly were having  some horrible thoughts on the day you posted.

I could pull those thoughts apart one by one, but that will sound patronizing.

Instead I strongly suggest you make an appointment with your doctor, to discuss your mental health issues. Try to make sure you do not only leave with a script for antidepressants, but a referral to a good counselor or psychiatrist.
Then get that script filled and use the pills.

Get some ketoconazol cream, put a tiny dab of that on the corner of your moth, that'll clear up that painful cracking that goes with low grade fungal attacks. Much easier to self treat than a lung infection ROFL

[Dan88]

Hi everone! Thanks for your comments! Yes, I'm on Atripla but I've always suffered from depression, even before being diagnosed with HIV (I haven't mentioned that to my HIV doctor, I know I should have.) Fortunately, I've been feeling good lately. Ever since I turned 28 I've only cried once a month, lol, so I guess I'm not currently suffering from depression. I'm tolerating my medication and I don't want a med change (at least not yet.)

About my ex, well... it's not like I hate him. We used to love each other so much and we even wanted to get married (he even gave me an engagement ring  )... but a lot of things happened after my diagnosis. I told him to go get tested! But he flatly refused, he also denied having HIV and kept on living his life without me as if nothing had happened. He's now on a relationship with someone he calls his husband (a divorced man older than him who has a daughter, he told me), he never got tested, so if he has HIV, he's putting other people at risk. I think that's one of the reasons I get angry when I think about him.

He was also very indifferent when I got sick just before being diagnosed. At that time I needed his support and he was the only family I had there. My parents were hours away, but he kinda ignored me and scolded me for calling him at work (I was in the hospital geez, I just wanted to let him know  ), and well, he was cheating on me (he wanted to be with someone who accepted the way he was, according to him.) He wasn't like that the first year and a half, but at the end of our relationship he hurt me a lot.  I still have negative feelings towards him, but I hope I'll get over it eventually.

I'm currently back to school (doing a post-graduate) and I think that the worst part of being hit with an HIV diagnosis is over (the first 8 months were a very dark period in my life.) I even had a short relationship with a boy (he was just 21 years old, not a man yet lol) who was HIV positive like me, a year ago. I've never felt so comfortable with someone in my entire life, maybe because we were both HIV+. He made me feel that not everything was over (at least love-wise), so my "poor me, no one will ever want to be with me again" phase ended. It was a shame he cheated on me and we broke up (he had a lot of psychiatric problems the poor thing.) But I guess I've improved. 

I'll make an appointment with a psychiatrist as soon as I can because I don't want it to get out of hand and I'm just waiting for winter to be over in order to exercise again. And I do have that ketoconazole cream. It does wonders.

My advice to the newly diagnosed people who come here is that we all go through the same things. It's not like my life is different from someone else's even though we're all unique in our own ways. With or without HIV, life is gonna have its ups and downs, we all make mistakes. At least in our condition there's hope, it's not as bad as HIV negative people think it is (although it's not a walk in the park either.) I'm very sure that science will improve our life quality in years to come. 

[Ptrk3]

Thank you for sharing your story with us.  Your hopeful outlook and optimism will help many of the newly diagnosed among us, so you have done a fine and generous thing in letting us into your thoughts.  You are so right in understanding that things do get better:  they do. 

I wish you the best in your ongoing journey.  Please continue to share your story with us all.

Best wishes to you for a long and healthy life.