POZ Community Forums
Main Forums => Living With HIV => Topic started by: FeralTerminator on January 29, 2024, 09:59:44 pm
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Late to the party with being able to really talk to anyone and went through my dumb phase that nearly killed me, now on the road to recovery to live a long life.
So like the title say's, I've been HIV positive since Feb 2006... almost 20 years. Thats... something I never thought I would say. Found out when I tried to join the armed forces out of desperation and poverty.
Went to a support group for a little while afterwards but ended up moving a lot and just never kept up with it. I was in denial that it would hurt me... I felt fine and I did for a long long time. Never went to the doctor, took meds... nothing.
In 2021 I started to get SEVERE back pain, it was crippling pain and within a week I had to leave work. I was going to doctors then the ER trying to find the cause of the pain. Everyone brushed it off as someone trying to score pills. They never took it seriously.
Eventually I was bed ridden unable to move due to the pain. I spent over 3 weeks unable to get up, out of desperation I called 911 and demanded they take me to a different hospital because I just couldn't take the pain anymore. I wanted to kill myself to make it end. On a 1-10 I was at a 19.
So they took me to a better hospital that had an MRI machine and did a scan. They found an infection in my lower spine and bone damage. My spine was pinching my spinal cord causing spasms... causing more pain... causing spasms. They did my blood work and my CD4 count was 19.
I would have died if I did not go to that hospital, I would have died screaming in pain unable to move.
They rushed me up to the critical care area and started me on some pretty extreme antibiotics and HIV medication. I spent a week in the hospital and the next 9 weeks in a rehab facility regaining my ability to walk.
Its been 2 years since my recovery in the hospital, I'm about 60% of what I was. I can walk for extended periods without a cane anymore, I can bend down and play with my dog, I can even mildly run on a treadmill again.
My case worker set me up with the Michigan Drug Assistance Program to pay for my medication which was my biggest fear. I made to much for medicaid but to little for decent insurance to pay for it.
Last time I had my count checked my CD4 was at 461. The Biktarvy they have me on has been working great with VERY minor side effects and its just an annoyance.
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Hiya.
Firstly, thank you for sharing your story and being honest about the denial.
I'm sorry to hear how things went and how sick you became. Although I'm glad that with support from the rehab facility you have been able to partly recover, walk again, and play with your dog.
What kind of dog do you have?
The Biktarvy they have me on has been working great with VERY minor side effects and its just an annoyance.
Do tell, what's the annoyance?
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Wow what a story you have… thank you so much for sharing. I totally understand your initial reaction to just avoid your diagnosis and continue to live a “regular” life for as long as you could. I think that’s a quite normal reaction, and luckily for you that you were able to get back on track with everything now.
Biktarvy is quite the wonder drug, eh? I too am curious about the side effects.
Well welcome and I am truly glad that you’re here and able to share in this experience with all of us.
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The annoyance is soft stool. I've never had a problem until I started taking it where after I go #2... in say an hour or so I have to go back in and wipe again... every single time. Its been weird.
But other than that no problems taking it. It's better than before where I suffered from constipation my whole life :D
I have a pitbull terrier, she's a sweet heart and I drove all the way to Florida to pick her up and visit my mom.
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Ojo. Hi there!…what was the back pain dx?, CMV?… how about taking fiber to help you with this stool… you were so lucky when you start treatment, life-saving treatment, that’s what the new medications
are now. You could have gone blind maybe even could have died… in any event, welcome to the forums in life itself…. please keep us posted…hugs
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The doctors believe it came in through a UTI but they were not sure.
The technical term is Discitis osteomyelitis
"Vertebral discitis-osteomyelitis is an infection of the spine that involves the intervertebral disc and the adjacent vertebral body but may also extend into the paraspinal and epidural soft tissues."
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ojo. Thanks for your response. We will learn from your experience…
Hugs