Hi, new member here and feeling sad

[mazeavenue]

Hi guys, new member here. I was tested positive in March and was also diagnosed with disseminated gonococcal infection (DGI). When I read the report from my GP that I had tested positive, I was both in shock and in a state of denial. At the time I knew too little about the virus and wasn't aware of HAART. It was nearly evening and looking at the sky made me feel like the sun was setting down on my life.  My mom wept too I recall.

CD4 was 120. But that wasn't the worst. The DGI was really terrible. Both my hands and legs swelled until I could not walk or hold anything. I had to depend on my partner for practically everything. I was warded in hospital for nearly 2 months. Doctors did an op to remove an abscess; it was painful even with anesthetics. Then docs said I had hypoadrenalism after I suddenly blacked out in the lavatory. Had to be put on hydrocortisone drips. Near the end of my stay I suddenly developed anaphylaxis to ceftriaxone and my stay had to be extended.

Now I'm on HAART with a two-pill version of Atripla - generic Truvada and efavirenz. But the DGI left my hands and legs with arthritis that I'm scared will never get well ever. I can't rotate my hand, I can't carry stuff that's heavier than 2 pounds (1 kg), I keep dropping things, nerves get painful if I write too much, I can't run or squat anymore and I still walk with a noticable limp. I try to be positive all the time but guess what, as I write this out I'm just crying. 

I really need more friends to talk to. Only my partner and mom knows about this. I have too few friends and I'm afraid of disclosing to anyone. I used to have a full-time job now I'm just doing something like Uber for a living. I'm afraid of going to interviews as I really fear getting rejected or worse, ostracized. I really wish I had someone, actually lots of someones, to counsel me. It's hard for me to see light at the end of the tunnel. 

Anyway thank u for reading my story until the end.

[virgo313]

Hello maze,

Sorry to read about your case. Meantime glad that you are on treatment.
I am not sure at the medical terms here, but I am sure you are following up well with treatment and hope that you recover well. Hang in there. We are all ears here to hear what you need to say and offer support. It is not end of a journey but rather a road to full recovery.

“Something like Uber” let me guess. You are driving Grab (e-hailing service). Well, I am now also driving e-hailing full time. It not bad as I have lots of flexible working hours and able to make money. Best of all. I hope u continue this while looking for a job.

As you are new. Give urself time to settle down. I am sure you will be fine.
Best wishes on your progress & please continue to say what u need to say in this forum. Thanks. Hugs! 

[em]

more friends everyone could use this in their lives 

unfortunately for me my wife one time told me that. we do not have any friends because you suck the life out of the room when you enter it .

ya she was mad at me, she thought  saying something mean might be worth while.

whatever .   I hope this gives you a giggle.   

no need to worry I have been dealing with what HIV has to offer  for many decades but seem to recover from illnesses at least mostly anyway,  I try to not think about them.

over the many years yet to come I have every belief you will find your way, recover and live for a very long happy loving and joy filled time . take your time breath let your self  heal  and think of all the good things coming your way . No worries.

 

[lightalltheway]

mazeavenue,

I am so sorry for your diagnoses and the health complications you have been through. It must be so terrible and you're brave that you could make It all the way until you were able to write and publish your very first post.

I am here tonight to tell you that we are all your friends, you are not alone. This forum is a useful tool, whether you look for advice, to share your thoughts, fears or to get inspired by other people's stories.

Although we have different narrative's, but none of us is ready to receive the results of a HIV positive. I want you to ' try ' to see it as a turning point in your life, in which you will work closely with your health care provider to be gentle with yourself. Examples, cutting off smoking, engaging with more sports, adopting healthy eating habits. It is a journey that stats from in and within.

As disclosing your status, I would suggest to give yourself sometime to stabilise your thoughts and to fully adapt with your surroundings. Your decision then will be more rationale I guarantee.

Depending on your location in the global map, maybe you can seek counselling sessions or therapy. Overall, you're not alone, I feel you and I am here for you too.

Light all the way,
Prince

[ZachR]

Hey beautiful person,

 I just cried silently throughout the text.. I would have hugged you very tightly if you were here. Your story resembles my very painful path at a young age and I relate so much. Perhaps, my comment isn't of any help but I would love to find someone to cry with for a good evening out under the setting sun and first stars breaking the lonely gloom of the evening sky.
We deserve better, we deserve to heal, to laugh, to feel healthy and happy. I believe, there's more beauty awaiting us in this life.

Zach...

[Wolfie123]

Hey dont give up! I literally wanted to kill myself when I found out in August 2019.im 25 and I felt everything... I'll never find love or be able to open my cafe . everything was on hold. I still haven't told my mom or anyone close.. I have no friends so it's hard not having anyone to talk to that's why and how I found this forum. It helps to write  it out I swear! Even if it's in a diary. It took me 2 weeks or so after receiving  my pills to even take them but I finally did and am moving forward from here. To pursue my goals I want to build my business so that's what's pushing motivating me right now.  I work full time I sometime get caught up in fear if anyone were to find out or I get sad looking at the healthy people who dnt have this virus...
But you're  alive  you've  made it this far 2 months ago I wasn't sure where I'd be. But i still maintain the same life I had now I'm just looking to live the best I can.

[Will1767]

Hang in there buddy and you too Wolfie 123.  Its been four years for me.  I too thought I wanted to die and spiraled into a depression.  Life does get better, and as someone else has already stated in this thread, focus on you, your health and your mental health.  If you have to come on here every day to post, do it!

There is hope for the future.  I have a great job and I even have a boyfried who I have been dating for over a year.  He is negative and loves me for who I am.  Disclosure is tough.  After four years, there are only 8 people in my life who know.  None of them are family.  We all gave to grow and progress in our own time.

You got this!

[JosephP]

Will, Wolfie, Zach and Maze! Hang in there, it will get better, it really will get better! The initial shock is brutal! I almost fainted when told... I became paralyzed.. I remember the lady talking to me but I couldn't say a word.. Yes, I felt dirty. I did stop going out to friends' houses... It has been 6 years for me and,like Will, I have kept it to myself... Only those in the 'need to know' category know. We will all survive, we all will fulfill our dreams. Go on, open your business.. Go to school. Find love.. I never felt the I wanted to die but I did imagine that I would have not have more than a two or three years, it has been six!. I have a great GP and an even better specialist.. She is the best! Find someone you can chat, communicate and relate to... And, keep your discipline with the meds!! They are our best friends! And, yes,  as Zach so nicely stated it, "we deserve better, we deserve to heal, to laugh, to feel healthy and happy."

[Tony_Wanch]

I do not inderstand   I was 'discovered' to be positive in 2016/2017  . I seem to het all sorts of conditions, eczema, bair fall , belly etc but my Thai HIV doctor makes no comment and takes no responsibility for missing possible contraindications  . I cannot attend a doctor for HIV in Malaysia where I live on a visa!  I would like to have friends for social life  sex would be nice but not essential at all   I am late 60s!!