Worse OI or illnesses you dealt with?

[Tonny2]

         ojo.      Hello everyone, well, LTS!!


Talking to my mother, while having lunch, I felt a stabbing pain in my left foot, usually, related to my neuropathy only this time, the pain was were I used to have a wound caused by vasculitis, oh man, a very painful condition. My mother told me that she remembers how difficult was that period of time, and we started to remember all the awful conditions I had and we tried to decide which one was the worse, and I was wondering what condition or OÍ, made you feel like wanting to give up fighting hiv/aids…I dealt with three different episodes of PCP, MAC, mollyscous, DILS, lhemolutic anemia (got a heart attack due to the lack of enough blood in my body), CMV RETINITIS (left me legally blind), vasculitis, very painful, three different episodes of pancreatitis due to kale tea, no food or drinks for 15 days, just I’ve hydrations…well, to me, it’s difficult to decide which one of all these conditions, but I think it was CMV RETINITIS… what say you?

[leatherman]

the most serious OI was of course PCP. Being too exhausted to move anything because you can't suck in enough air and you're about to die at any minute pretty much sucks.

but the worse illness was the thrush! so much thrush. It's what filled up my first partner's lungs, throat and mouth near the end and so scared me with the multiple bouts I experienced. To this day I still deal with swallowing issues due to the scarred throat tissue because of the thrush.

the worst side effect was puking. So much puking. Ruined my throat, my teeth, and twice was the reason for stopping treatment.

the only long term issue I deal with though (besides the whole dealing with 2+ decades of my life totally lost to nearly dying, watching others die, and sometimes wishing I would die) is peripheral neuropathy in my feet. It ALWAYS feels like I'm walking on hot sand. always. Tried several meds but they made me feel too wonky so I've learned to endure.

[J.R.E.]

but the worse illness was the thrush! so much thrush. It's what filled up my first partner's lungs, throat and mouth near the end and so scared me with the multiple bouts I experienced. To this day I still deal with swallowing issues due to the scarred throat tissue because of the thrush.


the only long term issue I deal with though (besides the whole dealing with 2+ decades of my life totally lost to nearly dying, watching others die, and sometimes wishing I would die) is peripheral neuropathy in my feet. It ALWAYS feels like I'm walking on hot sand. always. Tried several meds but they made me feel too wonky so I've learned to endure.

I agree with you. Around July of 2003, I had an Endoscopy done, to see what was causing the eating and swallowing issues I was having. To me, this was the most painful thing I went through, not the procedure,... Trying to eat and chew food, and drink liquids.

The Doctor could not complete the endoscopy, because as he told me,  " I have never seen a case of esophageal candida thrush as bad as what you have." I am convinced that this growth, also went into my lungs, which also resulted in the Bacterial Pneumonia that I had shortly afterwords. I was hospitalized for one night for the Pneumonia.

 I was started on Diflucan immediately. After I was started on HAART, I again had the thrush return. This time in the mouth, along with terrible lips sores, that were very painful and unsightly to deal with. I had warts on the lips, starting to appear,  that a dermatologist removed. ( Burned off).

 I think I was going through Immune reconstitution syndrome, at this point, before I knew what Immune Reconstitution syndrome even was.


I just want to remind everyone reading this, that these issues started occurring, into my 18th year of living with HIV. I was never of HAART, at this point, and finally begun HAART in late October of 2003. This was also my reality check and my AIDS diagnosis.

The wasting I experienced was terrible. When one looses 35 to 40 pounds of  body mass over a one year period, the results are horrendous. I looked like death. My face looked terrible, big empty eye sockets,.. My clothes were hanging off of me, and I had to drill extra holes in my belt to keep my pants up.

I mentioned this before,  I was working with a guy who had just returned to work after having a serious Heart Attack. Some of the employees were wagering bets, on who was going to die first, the guy with the heart attack or me. I heard that through the grapevine, about the bets. The guy who started the bets later died himself, so I guess what goes around comes around.

So yes, for me , The Esophageal thrush, the terrible wasting, Mouth sores and mouth warts, Anal wart removal, and finally the Nephropathy ( In that order were the worst.) for me, the entire ugliness of having AIDS, is very difficult to deal with. But you just push forward...

Can't  forget the anal warts removal. That was messy disgusting, and total discomfort for at least a week and a half, until that healed. Having to place Gauze between your butt cheeks, and doubling up on the underwear, so you won't bleed through your pants,...ugh,.. ( Thankfully no problems with that anymore). And one can't forget the brain fog, during that time.

And as far as the Neuropathy . I consider it a very mild annoyance today, But at it's worst, was terribly painful, for about 3 weeks. The Neuropathy started after I began HAART. I remember showering, and the water hitting my feet felt like needles slamming into my feet.

Today,.. I notice it mostly at nighttime, mild tingling, constantly cold feet, but no real pain. Some days can be slightly more annoying than others, but for the most part, at this point I really have no problems with the PN.

I don't know how I did it, But all the above happened, while I still continued to work full time, with 16 t cells,  I missed very little time from work because of anything I was going through in 2003. I think the most time I took off was for the removal of Anal warts, and condyloma. I think I took off 3 days, but I really could have used a week !

And I also have to mention as Mike did,  The continuous loss of dear close friends, throughout the years, had it's own psychological impact, especially when one is dealing with HIV themselves, you begin to wonder if your turn is coming up, from every death that you hear about.

I am also very surprised, that I never had PCP or KS, during this time.


Ray

[Tonny2]

         ojo.        Thanks for replying amigas…@ Leatherman, I also have lots of problems due to PN, drop toes and feet. I did have Trish but it wasn’t that bad even though I lived with AIDS five years after my AIDS dx, 20 cd4, and, like JRE, I worked during those five years after my dx, obviously, except when I got sick. I think that, working kept me alive, unfortunately, I had to retire when I couldn’t drive anymore due to my blindness, a very painful situation because not being to drive I lost my independence and freedom, but, I guess, I’m still alive…I just have lost two friends due to complications of AIDS, very painful and I started to feel guilty, I would think that, it wasn’t fair for them, they found out of their AIDS dx, a year before they died, even though their cd4 went over 300 after they started ART, both died of cancer, I would say to myself that it wasn’t fair because I had 20+ years living with hiv and I was still here. Well, I guess maybe you also felt the same, why they and no me?…anyway, thx for sharing…keep strong…hugs