POZ Community Forums
Main Forums => Living With HIV => Topic started by: David_CA on November 27, 2012, 01:42:09 pm
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Tomorrow marks the six-year point of my almost not surviving HIV / AIDS. At that point, my numbers weren't bad, and I wasn't on meds. I also hadn't disclosed my status to my family, which was causing me a lot of stress and anxiety.
I'd been feeling bad for quite a while, but I assumed it was fatigue and anxiety attacks, but my Dr convinced me otherwise with x-rays of my lungs. After I mentioned that I couldn't go to the hospital because I had stuff to do the next day at work, he told me "If you don't go now, you won't likely get another chance". That was when HIV / AIDS became real to me. I don't think I was in denial, but there's not a fine line between denial and acceptance; there's that in-between time that it was almost neutral to me. All that changed at that appointment and when I was admitted to the hospital. I remember feeling so weak, which was probably a blessing in a way; I felt no stress at this point, though I was in a bit of shock. I had pretty advanced PCP pneumonia, according to the doctors, and had had it for some time now. I was on high levels of oxygen and several IV's, had monitor patches all over my chest, had a bronchoscopy (the only real unpleasant part of the entire experience), was on corticosteroids, had many blood draws, etc. This is when I started Atripla, too. I also got to disclose that I was HIV+ and was sick to my mom, dad, and sister. The entire hospital experience was wonderful except for the thrush and one bitch nurse. Everybody else was amazing, the food was very good (especially after starting steroids... talk about having the munchies!), the oxygen made me feel really good and high, and the treatment worked well and uneventfully.
After eight days, I was released. It was almost surreal walking into our home. Initially, I wasn't sure if I'd ever see it again. Our cats were happy to see me; I'd missed them a lot, too. Hubby and a few other friends and family had spent a lot of time in the hospital with me, so I was never without human contact. Then is when my being HIV+, of having AIDS, of coming so close to not even being alive (according to my doctors) all hit me, and I started crying for the first time. It was more real than it ever had been, and I had to accept my 'new' reality and deal with this all if I wanted to survive and live as much of a normal life as I could.
Each year at Thanksgiving, when we go around the table telling what we're thankful for, I mention 'being here and being well'. I'm thankful every day that I responded so well to treatment for PCP, for being able to tolerate Atripla with very few side effects, for insurance and good medical treatment, and, most of all, my husband, family, and friends. I make a point to not bitch about having somewhat crappy lung capacity now, for the appointments, for the few side effects I do have (mostly the constant ringing in my ears), for the pills I take and their cost, or for anything else related to this disease. I have far more to be thankful for than I do to wish was different.
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Congrats on the anniversary and returning from the brink. Curious if you felt selfish/guilty for not informing your family until you were sick in the hospital? I chose that same path and have had others tell me that's wrong.
Wolfie
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Congrats on the anniversary and returning from the brink. Curious if you felt selfish/guilty for not informing your family until you were sick in the hospital? I chose that same path and have had others tell me that's wrong.
Wolfie
Thanks. Yes, I did feel guilty for not telling them; that was what was causing most of my stress. We don't do secrets about important stuff in my family, yet I was doing just that! What I had intending on doing is telling them when I was on meds, doing fine, and was undetectable... or so I told myself. I think it was all a delay tactic that could have gone on indefinitely.
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As you probably know we don't do thanksgiving here in NZ David, but I'm certainly thankful I have been able to spend the last 7 years with you and David.
Maybe I should start my own thanksgiving day, I will call it NZNC Thanksgiving Day....and it shall be mine. all mine... ;D
Aroha
Jan :-*
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Thanks. Yes, I did feel guilty for not telling them; that was what was causing most of my stress. We don't do secrets about important stuff in my family, yet I was doing just that! What I had intending on doing is telling them when I was on meds, doing fine, and was undetectable... or so I told myself. I think it was all a delay tactic that could have gone on indefinitely.
Sometimes, I think we are too hard on ourselves, especially when using hindsight, which may be 20/20, but it does not feel or think. Nobody could have prepared you for becoming poz and finding yourself on death's doorstep, because it's a once in a lifetime event. When I hear stories like yours and Wolfter, I don't really dwell on the method, but on the outcome and the character of the people involved.
I believe that you did what you thought best for your family and that came from your love and compassion for them. Intellect may have directed you differently, but we are more than any one component of being human. I always thought that the standards, some of us set for ourselves, are unrealistic, simply because life happens. When I look at someone who has become a survivor, I look to their character and since I share your history, I ask that you no longer judge yourself on this issue.
Actions that are directed by profound love and respect for others, are rarely wrong. Again, it's not the steps that matter so much, but the outcome.
Joe
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Joe, I don't feel guilty now; I know that I had to make peace with my diagnosis before I could expect others to. At the time, I did feel really guilty, as I had always been able to discuss things with family. Had I been able to talk about this with them, I would not have had nearly as much stress or anxiety as I experienced. When I did finally talk to my mom, I was still on pretty high levels of oxygen and was quite high. She asked if there was any other news I needed to tell her. I told her that I had a motorcycle. I think that bothered her more than the HIV!
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As you probably know we don't do thanksgiving here in NZ David, but I'm certainly thankful I have been able to spend the last 7 years with you and David.
Maybe I should start my own thanksgiving day, I will call it NZNC Thanksgiving Day....and it shall be mine. all mine... ;D
Aroha
Jan :-*
Jan, I think a day of personal thanksgiving is perfect! It'd be time to reflect on what we and loved ones have to be thankful for, which always helps keep things in perspective. Hugs.
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I remember when you shared this episode 6 years ago with us. I was pretty shocked because your numbers really were not that bad at the time. My brain doesn't retain as much now as it use to, so I hope to remember this post 6 years from now. I thank you for sharing the personal side of it here with us today.
I hope all is going well on your side.
Sk
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That was tough to read without a few tears, but a great share and one that many newbies, and oldbies should read.
Celebrate!
Thanks again for your post, awesome!
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David,
Very touching to hear again the story of your coming to terms with HIV...so powerful! We both learned of our diagnoses within a month or so of each other and then a good number of us met for the first time in Montreal and have literally spent a week together every year since then. While I would certainly rather be "miraculously cured" I would not trade any of the life enriching experiences that have come my way since my diagnosis. I certainly would have not have the great friends I have made here. Thanks for reminding me what I am thankful for!
Gary
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David, thanks for sharing your story. I am glad you listened to your doc. Your story reminds me so much of my own. I know it is similar to many members, while being uniquely yours. We are glad you're here to share this.
Do you have anxiety over being so ill, thinking it could happen again out of the blue? I know that is something I struggle with. Or, have you been able to move past that and rarely give it much mind?
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David, thanks for sharing your story. I am glad you listened to your doc. Your story reminds me so much of my own. I know it is similar to many members, while being uniquely yours. We are glad you're here to share this.
Do you have anxiety over being so ill, thinking it could happen again out of the blue? I know that is something I struggle with. Or, have you been able to move past that and rarely give it much mind?
I'm glad I listened, too! I really don't worry about it much these days. Since I started Atripla and got over the damned PCP, I've been amazingly healthy. I've had a couple minor colds or sinus issues, but I've always had them. It does seem like I have fewer now. I've always taken pretty good of myself, but I tend to limit alcohol, for example, since meds are a bit tough on the liver. The only real issue I had was shingles about a year and a half ago. Within a couple days, I'd started Valtrex. Shingles was pretty painful but wasn't nearly as bad as some I've seen... likely due to starting the antiviral so quickly. After the experience of being as sick as I was and not really knowing if I was going to live, I really don't worry about things like that. If I do get sick, I'll do everything I can to get well again!
There's something I totally forgot to mention. One thing that really helped me is the AidsMeds forums. I learned pretty quickly that I wasn't alone, what many people (LTS's mainly) had gone through pre-(effective)meds that I likely would never experience, and that others would share information, their stories, and give support when I needed it. Due to the AMG's, I've met a lot of really great people and visited some wonderful places. The overall experience has been very positive, and these forums and members contributed a lot to this.
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I'm thankful every day that I responded so well to treatment for PCP, for being able to tolerate Atripla with very few side effects.........I make a point to not bitch about having somewhat crappy lung capacity now, for the appointments, for the few side effects I do have (mostly the constant ringing in my ears), for the pills I take and their cost, or for anything else related to this disease. I have far more to be thankful for than I do to wish was different.
Your entire post speaks volumes but this portion really hit home with me when I was reading it. Thanks for taking time to put this out here.
I have not read anything on this forum in months but decided to take a 'look-see' and realize once again the value added by many of the members here.