POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: slyberguy on December 29, 2013, 06:15:07 pm
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My lover of 14 years (with a 1 year break 5 years ago) is Hiv positive diagnosed 2 months after getting back together. Although his medication (Complera) is keeping him in an undetectable status the side affects are turning him into a shell of the person I once knew. He is in what he describes as severe pain in his shoulders and lower back plus he suffers panic/anxiety has called an ambulance for him self 2 times in the last week and I've taken him to the ER at least 3 times a month for the last year. His eyes are distant with worry and fear and he has lost a lot of weight but maintains right around 110 at a height of 5'7. He cannot be alone so I cannot work. We are awaiting Medicaid and disability ins but are about to be homeless. His health care consists of wnchhs in which can only schedule a blood check and follow up every 3 months. He has been referred to rha phsyc thereapy and seen a counselor 3 times has been institutionized 3 times but only for a day or 2 each time. I know he is the one with the illness so I feel guilty saying that sometimes I feel like its worse on me.. I need a break and don't know what to do I wish he could go for a month or two somewhere and come back to me as the person I fell in love with 14 years ago.. but older?
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It might be possible that the complera is contributing to the anxiety.
It sounds like he (I'll get to you in a minute) is being under-treated for a combination of challenges that include mental health issues and therefore mental health treatment.
I don't think you should be attributing his overall current state of life to side effects from medication! If the complera needs to be switch, he may have to push for that.
That fact that both of you cannot work because of his state is not tenable, and as you say, you might be homeless because of this? Um, something is definitely not working and sounds like you need some professional advice about the next step.
I don't think you should feel "guilty" about observing how hard it is on you, too. Its really not so important to judge who "has it worse" cause sounds like you both are in dire straights.
He is not going to go back the person you fell in love with. Nobody but nobody goes back in time. Fantasy. But he might be able to get the mental health treatment he needs and live well again. Exactly how is he being treated for anxiety? Not at all? Or is he getting treatment but not following it? Drugs and or therapy? Or is he following it but its not working?
What about pain medication?
As I said, something seems off - you aren't going to get disability, obviously because your bf is ill, but you are in a situation in which you are unemployed and maybe soon homeless because of his mental health? Start asking around for some support and guidance... real options... Don't dream of some miracle solution - go out and find a solution. (Though its only human to do so, we all do!)
Unfortunately, sometimes the "system" isn't proactive and doesn't really care what happens, just cleans up messes. You're going to have to figure out some solutions for your couple, but also for yourself. Also remember the squeaky wheel gets the grease... hopefully...
Does WNCCHS have case managers?
And you probably need a pro to talk to about the housing situation. At least find out the facts of what might be possible and see what preventative measures are available.
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Thanks for the reply I will answer your questions in the order you posed them and clarify some issues as well. I don't blame all on the complera as he was switched to complera from Ativan over a year ago due to a burning sensation over most of his body.. things got better for awhile then other symptoms started.. he had a pda surgery at birth so there are scars and scar tissue there on his back also had both legs broken at age four and one healed about an inch shorter than the other causing a curvature in his spine and a misalignment in his hips and neck.
The pain of these injuries seems to be exasperated by the complera. Pain causes stress and anxiety and eventually sheer panic. We are awaiting medicare and disability for him so we have a better choice in healthcare professionals and hopefully some in home healthcare, so I may work.
He is being treated for anxiety with medication but he has always hated taking unnatural medications and will normally find a reason not to take it.. he scours medical websites for reasons not to take medications (side effects) and thinks he will be better off without them especially ssri's. He wont take the lyrica he is prescribed, barely will take oxycodone but will take his marinol.
I cant know for sure what he tells his Therapist about whether or not he takes the meds or how he is doing mentally, most of the time he doesn't see his mental health as bad, its the doctors and the system who are wrong not him. Its hard to tell a person who is as intelligent as him that he is being irrational, without them "rationalizing" their behavior. He does however have moments it seems of pure lucidity when he says he thinks he needs to be commited involuntarily as apposed to voluntarily because he is smart enough to tell doctors what they want to hear and hide his issues long enough to get out otherwise.
I will check on the case manager thing at wnchhs and am going to try to go to his next therapy session with him and social services tomorrow to see about housing assistance.. please if you have any more questions feel free to ask.. he knows about this post so im sure he will eventually chime in here as well.. Thanks again for responding.
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Something is miswritten in the drug history. Ativan is a benzo for anxiety and whatnot, and has nothing to do with his HIV medicine - Complera.
You seem to have a pretty good overall picture of whats happening to his mind and behaviour. My take from a distance is that he is a controlling person and its getting worse, not better. Perhaps a bit of obsessive-compulsive becoming dysfunctional.
I say that because NOBODY with HIV is going down the right path when they become obsessed with "natural" verus, i suppose "unnatural" medicine. The latter referring of course to effective, approved, and relatively-safe-if-used-as-directed MEDICINE. Yep, medicine is what expert doctors and scientists have offered us all to deal with pain, infections, mental illness etc etc.
We are not the experts. I am glad I have my docs who went to med school and have treated thousands of patients professionally, taking care of my health. Meanwhile I get to go to work and do MY job well enough, and live my life, and muddle through. You see exactly where I'm getting at -- but your bf does NOT see it this way, anymore, at least. He is lost.... lost lost on a path to destruction. He even knows he has freaked out on the control, and told you so, so I suggest you go forward on that honest self-reflection he has made, the "lucidity". Remind him of that, going forward.
He's not going to claim back his life from pain through natural remedies. He's not going to cure his mental health through further playing around and/or avoiding psychotropes and playing games with any talk therapy that might be offered.
Thank god, at least he is not an HIV denialist, and takes his necessary HIV medicine.
I want to write this to you in support of you. Surely you love him. Don't let him control your thinking about what he is doing to himself, and the condition he is in. You have a right to your observation, which sounds on the money. He's not seeing things straight.
I responded to your post because especially you said you can't work and might face homelessness because of all the attention he requires. I highly encourage you to grap a social worker and discuss these issues as they pertain to YOU. Sadly, your bf might be such a controlling and out-of-touch person that he will drag it all to hell. Not saying he would do this on purpose, rather, because he is out of his mind. Nobody should be homeless and unemployed because their lover isn't following doctors orders. He doesn't think his mental health is bad? Reread your own posts. He's pretty bad off and you see it clearly enough.
I hope what is going to happen is he gets the medicare and disability and therefore the financing to get better medical and mental health care, and soon.
Whats the timeline on the financing for better health care?
Hang in there.
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Wow, tough situation. I feel for you.
It's very common for people with mental health issues to stop taking their meds. They generally don't like how the meds make them feel, and look for rationalizations to stop. They think they will be better off without them -- but generally, they're not.
My partner's mother has had lifelong mental illness. A couple of years ago she went off her meds, and things got very dire. We eventually had to involuntarily commit her to a psychiatric hospital for a couple of months. She's better now, but she's also in an assisted living facility where going off meds is no longer an option.
I don't know how much of this is applicable to your partner. But he doesn't have a right to put YOUR health or home in jeopardy, just because he finds way to rationalize not taking meds. If you aren't looking out for yourself, you certainly won't be able to look out for him.
Easier said than done when you love someone, I know.
Complera can have some CNS side effects, so perhaps they're contributing to his anxiety. There are a bunch of other options that could be tried, provided he doesn't have any resistance issues.
Complex situation you have to deal with … your partner is lucky to have you on his side … but try not to let his problems run you into the ground.
Best --
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My mistake mecch.. it was atripla not ativan although he has ativan and Valium lol
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Will update more from home at the er again tonight was here last night as well.
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Atripla was great for his HIV but in all likelihood a bad choice for his mental health. I'm not sure about the Complera but I think also, it is sometimes not the choice for people with anxiety and/or depression or similar dispositions. CNS - Central Nervous System effects - anger, anxiety, depression, etc.
Unfortunately, some docs do NOT watch for this and even a few don't know it. Your bf needs more finely detailed or at least individualised care, perhaps.
I was thinking about you again after I wrote my last post, and I'm glad Vertigo joined your thread to offer support and another perspective. I was thinking about you because you said your bf is trying to get his disability his medicaid.
But what we are gingerly asking and worrying about - what you are planning to do about your own housing and financial basics?
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Ok. Sorry to hear that...
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You might see if a doc will switch your partner from Complera to Stribild. It's also just one tablet a day, like Complera and the Atripla before that, but it doesn't contain the NNRTI component that might be contributing to his anxiety. It uses an integrase inhibitor instead. Tivicay/Truvada would also accomplish the same thing, and possibly have fewer interactions with other drugs, but it is two medications to manage vs just one. Good luck, and sorry you're back at the hospital with him.
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Thanks for all the replies heres what thes last to visists consisted of and an example of what we are going through. Sunday night a pain developed in his lower back started like a soreness at the base of his spine (coccyx) and developed into pain/pressure he described as burning from the inside out he became uncontrollable in his movements shaking and arms spasming so took him in and right away he was recognized as a frequent flyer and whatnot. the did a ct scan wanted to do an mri but couldn't due to the unknow properties of his stint. after two doses of dilauded he felt a little better the scan showed nothing that could explain the pain but the dr ponted out that there was a fair amount of stoo in his rectal area and said that may cause some pain and prescribed a stool softener. on the way home we bought a 2 pack of enemas and tried to use one to no avail.. tried again after sleeping nothing, by this time he is frantic thinking his colon is gonnan explode anxiety sets in so back to the er.. they don't do anything this time say his belly isn't extended and that he should wait for nature to take its course so rather than leave I suggest PSHYC eval. will let you know how that came out after I return.. brb
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ok so once we asked for the psych eval you are supposed to talk to a clinician for entrance into the behavioral health unit known as copestone here in Asheville NC. to start that process they take blood and an exray of the supposed affected area in this case his abdomen. we requested that we both talk to the admitting clinician they say its proosible but take all his clothes belongings and shoe put him in a paper outfit tell me where to wait and the clinician will find me. 2 hours later I go to the er triage and ask how much longer and am informed that the clinician determinrd he doesn't need to be there and was calm after seeing his colon area was empty and blood was fine. I had no say in the matter. was gonna try and push for involuntary but never got the chance. he needs the help but I guess im not his next of kin or mother so I have no say. Thanks for the meds suggestions definitely going to look into it hopefully tonight will be drama free ill sleep and be able to get up tomorrow and look for a job and other types of assistance. trying hard to keep my sanity.. if I have missed any questions please reask..
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HIV is so straightforward compared to mental health issues. It sounds like you are doing your best. If you haven't already, try to engage with a social worker, both for his care and your own. I hope the new year gets off to a better start for you both.