[paddym22]

Is thre anyone out there with a HIV diagnosis? It sure gets lonely as there are certain things I would love to discuss in the crossover between mental health and HIV as they are so intertwined. If you dont want it to be known that you are please PM me, confidentiality assured.

Thanks

Paddy

[Grithnir]

I don't have HIV as I know today but I could possibly and need to be checked again. I have gotten over my fear of it or coming down with it and do everything to protect myself from it, but many men I know have it. It is sad because it is so stigmatized, but in reality it is not really that dangerous given that other physical problems can take you down a lot sooner, and not everyone wants to live to be 90. Now with the retro-viral drugs, you can easily live to be 20-40 years longer after you contracted it. In rare cases it sometimes never even surfaces into AIDS.

[paddym22]

Grithnir, thanks for replying, what I meant was to share with someone the constant rigid pill taking, the illnesses that go with it, the stigma we live under, the timebomb like existence that it is and the worry that one could pass on such a horrible condition to someone else inadvertendly. I wouldnt mind living to be 90 and not to be dependent on drugs to extend your life which is a constant daily reminder of a careless foolish moment several years ago. THe constant attendance at hospital for check ups and bloodwork and investigations necsessary should you develop a cough or your glands swell up that an otherwise normal person can just pass off as a cold. The fear inerhent as your immune system decreases and those vital CD4 Cells deplete and your viral load increases, these are things I contend with on a daily basis and would like to meet someone else here who also has a mental condition for support and solidarity. That is all. Living to be 55 as a result of anti retro viral drugs, I am sorry, is no consolation.

[michele#3]

Sorry that you have HIV. While I don't have it my little brother and best friend died of full blown AIDS. My brother lived 16 years after his diagnoses much longer than my best friend did. He only lived a year. I quess what I am saying is medicine has made large advances in the treatment of HIV so hopefully you can live a long and full life.

[2bpainfree]

i'm sorry that you are dealing with this. i'm good friends with fox (she's been on with you at my house before) and she really respects you. (hugs from south dakota)

[paddym22]

HI

Its really nice to meet you, any friend if foxes is a friend of mine.

How did you find mr hidden away in the HIV thread. I worry about FOx his parents seem awfully sttick especially his father, I hope he is ok,

anyway nice to meet you adn I hope to get to know you soon, I get from your name that you are a pain sufferer that must be awful

Paddy

[lynn P.]

I'm sorry (((Paddy))) I didn't know you had HIV. My brother also passed from AIDS. There must be an online support group. Take care of yourself Paddy.

[michele#3]

Paddy

[salukigirl]

Sorry you're going through this. My brother was diagnosed with HIV over a decade ago and it has since turned into AIDS. He kind of cut himself off from the family when that happened, I guess assuming we wouldn't be there for him or we would treat him differently? He now lives in a different state with his boyfriend and I haven't seen him in several years.

That's about the extent that I have experience with it. I had a scare once because I had found out that my boyfriend had been cheating on me with a girl I knew slept around and I went to go get tested for it. Longest week EVER!!!

Down here we have a pretty good GLBTQ network with a lot of AIDS awareness and people are very open about it so I could find out some information if you want?

((((((((Paddy)))))))

[paddym22]

((((((Saluki))))))) how very very kind of you. I am so sorry about you brother it is at times like this he needs his family right around him. I have pretty god medical support here where I live and the city I live in is famous for its gay population so there is no shortage of information. I was just hoping to meet someone who had mental health issuues as well as hiv you see and to learn from them how they cope with a dual stigma. but thanks so much for your kindness.

[possum220]

Dearest paddy maybe you could ask Doc John for a Forum for support for HIV sufferers and linked mental health issues. Or maybe a thread in the LGTBO??

I'm sorry you have HIV hun. I simply can't imagine what it's like.

[salukigirl]

That wouldn't be a bad idea to add HIV and other STDs into the sex and gender forum. I'm sure you're not the only one one here that wants a place to talk to others with the same issues.

[January]

Paddy, I don't know what to say, but I figured a hug couldn't hurt.

(((((((((((((( Paddy )))))))))))))

[lynn09]

Hi (((((paddy))))). I'm sorry that you're having to deal with HIV. I don't have HIV, but I do have a hyperactive immune-system disorder (ISD) that requires constant maintenance, plus Major Depressive Disorder, PTSD, and chronic pain.

I have had a number of Stevens-Johnson Syndrome (SJS) allergic reactions in the past to medications and other chemical and environmental substances. I am now allergic to light, especially sunlight, fluorescent lights, television and computer screens, as well as heat - if I get too warm I break out in hives inside and out, so I have to stay confined in a very cold and dimly-lit apartment about 99.9% of the time. Needless to say, this puts quite a damper on socializing. I have had to live this way for the past 11 years, in part due to my abusive family members' interference in my healthcare, so I understand what it's like to be isolated and without emotional support.

I take at least 400mg of Benadryl and 300mg of ranitidine daily to suppress my immune system even in my cold, dark cave, otherwise I break out in hives inside and out, my skin sloughs off, and I even bleed internally. Exposure to antibiotics, pain meds, anesthetics, or other chemical and environmental substances can trigger a fatal allergic reaction within moments. So, I can't have surgery for any reason, nor can I take meds to help me manage my depression, and I'm pretty much limited to taking Tylenol for pain, etc., etc.

I have found that most people do not understand my hypersensitivities and tend to shun me assuming that I am a liar, a hypochondriac, and/or a lunatic - so I'm well acquainted with being stigmatized. There is no cure for my ISD - in fact, the doctors don't even know what to call it - chronic SJS maybe - because most people don't survive long enough for them to know precisely how the body is affected or how to manage and control the hypersensitivities. But, I worked in the medical field for many years and learned a great deal about how the body works, paid attention to what my allergists taught me and how they treated my reactions over the years, and read everything I could find about similar immune-system disorders; because of this knowledge, I have survived more times than I should have. Besides, I'm just too stubborn to go quietly or easily.

Well, those are my "credentials;" so if you think I can empathize and support you in any way, paddy, please don't hesitate to let me know - I'll be glad to lend an ear and help if I can. lynn09

[paddym22]

Originally Posted by michele#3

Sorry that you have HIV. While I don't have it my little brother and best friend died of full blown AIDS. My brother lived 16 years after his diagnoses much longer than my best friend did. He only lived a year. I quess what I am saying is medicine has made large advances in the treatment of HIV so hopefully you can live a long and full life.

Michele, I am so sorry you lost your brother and bestfriend to AIDS. Thank you so much for replying. Your right medicine has made great advances in recent years in the treatment of HIV. I dont know really what to say to you but I am grateful for your friendship and support. You are stellar!!!!!

[paddym22]

Originally Posted by possum220

Dearest paddy maybe you could ask Doc John for a Forum for support for HIV sufferers and linked mental health issues. Or maybe a thread in the LGTBO??

I'm sorry you have HIV hun. I simply can't imagine what it's like.

Possum my friend, thank you for your suggestion, it is a great idea.

thinking of you always

Paddy

[paddym22]

Originally Posted by January

Paddy, I don't know what to say, but I figured a hug couldn't hurt.

(((((((((((((( Paddy )))))))))))))

(((((January))))) Its a very opportune moment for a hug, thank you

Paddy

[paddym22]

Originally Posted by lynn09

Hi (((((paddy))))). I'm sorry that you're having to deal with HIV. I don't have HIV, but I do have a hyperactive immune-system disorder (ISD) that requires constant maintenance, plus Major Depressive Disorder, PTSD, and chronic pain.

I have had a number of Stevens-Johnson Syndrome (SJS) allergic reactions in the past to medications and other chemical and environmental substances. I am now allergic to light, especially sunlight, fluorescent lights, television and computer screens, as well as heat - if I get too warm I break out in hives inside and out, so I have to stay confined in a very cold and dimly-lit apartment about 99.9% of the time. Needless to say, this puts quite a damper on socializing. I have had to live this way for the past 11 years, in part due to my abusive family members' interference in my healthcare, so I understand what it's like to be isolated and without emotional support.

I take at least 400mg of Benadryl and 300mg of ranitidine daily to suppress my immune system even in my cold, dark cave, otherwise I break out in hives inside and out, my skin sloughs off, and I even bleed internally. Exposure to antibiotics, pain meds, anesthetics, or other chemical and environmental substances can trigger a fatal allergic reaction within moments. So, I can't have surgery for any reason, nor can I take meds to help me manage my depression, and I'm pretty much limited to taking Tylenol for pain, etc., etc.

I have found that most people do not understand my hypersensitivities and tend to shun me assuming that I am a liar, a hypochondriac, and/or a lunatic - so I'm well acquainted with being stigmatized. There is no cure for my ISD - in fact, the doctors don't even know what to call it - chronic SJS maybe - because most people don't survive long enough for them to know precisely how the body is affected or how to manage and control the hypersensitivities. But, I worked in the medical field for many years and learned a great deal about how the body works, paid attention to what my allergists taught me and how they treated my reactions over the years, and read everything I could find about similar immune-system disorders; because of this knowledge, I have survived more times than I should have. Besides, I'm just too stubborn to go quietly or easily.

Well, those are my "credentials;" so if you think I can empathize and support you in any way, paddy, please don't hesitate to let me know - I'll be glad to lend an ear and help if I can. lynn09

Dearest (((((Lynn09))))

Your "Credentials" more than fit the mark and I think you understand very clearly the challenges involved in an immune-system disorder. It does seem unfair though that you are challenged like this through no fault of your own whereas my disorder is self imposed and quite cavalier as a good friend correctly pointed out to me. My mental health status is Bi Polar rapid cycling, Borderline personality disorder, PTSD etc. etc. To be honest with you at this stage I am passed feeling sorry for myself, that is defeatist. I dont look for sympathy from people I just as you say look for empathy and understanding. My greatest challenge is medicaton compliance at the moment, when I fluctuate in mood so much my medication schedule goes out the window and I forget or I dont remember whether or when I have taken my meds. I find when I am depressed to be the worst stage as I just dont care somedays and then I panic when I realise what I have done. My CD4 and Viral Load are like yoyo's and God help my medical team they really have their challenge set out for them. Recently I am getting these 48 hour flu's when my temperature soars to 104 and I am exhausted and nauseated. If I am in a normal of hypomanic mood I can manage them and get on with it, but godforbid I am depressed then I really just feel what is the point. Other things are of course the toxicity of the meds and keeping them down, just there is little I can do about that, they are my life line.

What I am saying really is that mental health disorders and this disorder dont mix very well. Like you I wont give in, but sometimes that line is very thin and I need a little reminder that life is worth it after all and it generally is. When I meet someone like you I am dwarfed into feeling my complaints are miniscule in comparison. But it is the constant threat and the constant worry of a fever or a cough or a rash that we live under that I think you will understand.

You take good care and we should check in regularly with each other by PM to see how we are doing, it is sad but good to know if you understand what I mean that someone out there knows.

[lynn09]

Originally Posted by paddym22

Dearest (((((Lynn09))))

Your "Credentials" more than fit the mark and I think you understand very clearly the challenges involved in an immune-system disorder. It does seem unfair though that you are challenged like this through no fault of your own whereas my disorder is self imposed and quite cavalier as a good friend correctly pointed out to me.

Hello, again, paddy! I'm not sure I fully agree with your friend, paddy. I understand that you knew the risks associated with your behavior, but you did not choose to get HIV unless you knowingly exposed yourself to it with the intent of contracting the virus. I don't look at my challenge as fair or unfair - it simply is what it is. I don't believe any of us are important enough for the universe to single us out for good or ill. Further, when you consider how susceptible we humans are to any number of illnesses and injuries, the "Why me?" question becomes more realistically, "Why not me?"

Originally Posted by paddym22

My mental health status is Bi Polar rapid cycling, Borderline personality disorder, PTSD etc. etc. To be honest with you at this stage I am passed feeling sorry for myself, that is defeatist. I dont look for sympathy from people I just as you say look for empathy and understanding.

I agree - self-pity and sympathy from others is of little value or benefit. However, it is imperative that we be just as understanding, empathetic, and compassionate towards ourselves as we try to be towards others and hope that others will be towards us. Besides, we are not our infirmities - they do not define our identities, but how we deal with them and treat others despite them most certainly does.

Originally Posted by paddym22

My greatest challenge is medicaton compliance at the moment, when I fluctuate in mood so much my medication schedule goes out the window and I forget or I dont remember whether or when I have taken my meds. I find when I am depressed to be the worst stage as I just dont care somedays and then I panic when I realise what I have done. My CD4 and Viral Load are like yoyo's and God help my medical team they really have their challenge set out for them.

Recently I am getting these 48 hour flu's when my temperature soars to 104 and I am exhausted and nauseated. If I am in a normal of hypomanic mood I can manage them and get on with it, but godforbid I am depressed then I really just feel what is the point. Other things are of course the toxicity of the meds and keeping them down, just there is little I can do about that, they are my life line.

I hear you - having to interrupt whatever I'm doing to take meds, or to limit my exposure to light and get my body temperature down is sometimes so annoying - it can make me feel like I am a slave to my infirmities and that they dictate my time and activities. But I do my best to diminish the stress-inducing impact of that attitude by telling myself that these interruptions or intrusions are no different than taking time to eat or use the facilities - again, it is what it is. So I have an alarm-clock widget on my desktop to remind me when it's time to take my meds, and I have gotten used to breaking up tasks to limit my exposure to light and heat. As for the depressive episodes, I have rules - one is that I do not allow myself to get depressed about being depressed; another is that I do not engage in philosophical discussions or debates with myself when I'm depressed knowing that most of the questions posed have no answers, and my perspective is going to be biased to the negative due to the nature of depression anyway. Since I cannot take psych meds, I have learned how to play games with and sort of "trick" my mind in order to manage.

Originally Posted by paddym22

What I am saying really is that mental health disorders and this disorder dont mix very well. Like you I wont give in, but sometimes that line is very thin and I need a little reminder that life is worth it after all and it generally is. When I meet someone like you I am dwarfed into feeling my complaints are miniscule in comparison. But it is the constant threat and the constant worry of a fever or a cough or a rash that we live under that I think you will understand.

I do understand, paddy - dealing with mental and physical infirmities simultaneously, not to mention the side-effects of the "treatments," makes for precarious footing! Although we are all aware of our mortality, it's a bit more in our faces on a moment-to-moment basis for some of us than others. However, I must admit that this has made me much more aware of just how very precious, fragile, and fleeting life is, and serves to remind me to invest whatever time and energy I have more wisely - life is worth whatever we choose to make it worth. On those occasions when I am tempted to give in and give up, I ask myself, "Have you got some place better to be, or something better to do?" Staying rooted in the here and now can be tough sometimes, but in reality it is all that any of us has. All humans are faced with difficulties in this life - some more, some less; but just because someone might appear to have a greater burden than you, that does not negate the weight of your burden any more than yours negates that of someone with a seemingly lighter burden than you. Besides, human nature being what it is, none of us would develop empathy and compassion without the personal experience of suffering.

Originally Posted by paddym22

You take good care and we should check in regularly with each other by PM to see how we are doing, it is sad but good to know if you understand what I mean that someone out there knows.

You do the same, paddy. You're right - although I would never wish on anyone else the circumstances that we share, it does make it a bit easier to know that someone else truly feels your pain. Talk to you again soon. lynn09

[paddym22]

No you are right, of course I didnt set out to contract the disease, it happened , the details of which are long forgotten and the person from whom I contracted the virus forgiven. I commend your mastery of the depressive cycle I will try to apply your methods as I do tend to debate and question the point of it all. I guess it is all the stigmas that are rolled into one that are sometimes hard to deal with, being gay, being HIV, having various mental Illnesses. It is simply too much for some people to bare and I dont blame them.

I do things like having a pill box schedule, alarm watch etc. to remind me to stick to my pill routine, but I really have to fight against the depressive mind games that are played out in my mind. Thats is where the real battle is. But life is as life is and it is not bad overall. I have a good life and good people around me, but I do feel different to them and not in a "poor me" way but more in a ''well thats there life, this is mine'' and if I stick to the additional things I have to do I will be ok.

I have one of my 48 hour flu like days today and am exhausted so I wont stay on too long, but thank you so so much for replying and reminding me what it is all about and how good life can be.

Fondest regards

Paddy

[lynn09]

Originally Posted by paddym22

No you are right, of course I didnt set out to contract the disease, it happened , the details of which are long forgotten and the person from whom I contracted the virus forgiven. I commend your mastery of the depressive cycle I will try to apply your methods as I do tend to debate and question the point of it all. I guess it is all the stigmas that are rolled into one that are sometimes hard to deal with, being gay, being HIV, having various mental Illnesses. It is simply too much for some people to bare and I dont blame them.

I do things like having a pill box schedule, alarm watch etc. to remind me to stick to my pill routine, but I really have to fight against the depressive mind games that are played out in my mind. Thats is where the real battle is. But life is as life is and it is not bad overall. I have a good life and good people around me, but I do feel different to them and not in a "poor me" way but more in a ''well thats there life, this is mine'' and if I stick to the additional things I have to do I will be ok.

I have one of my 48 hour flu like days today and am exhausted so I wont stay on too long, but thank you so so much for replying and reminding me what it is all about and how good life can be.

Fondest regards

Paddy

(((((paddy))))) You give me too much credit! I like to say that "Depression may be my nemesis, but it will never be my master!" Unfortunately, I am not its master, either. Believe me, it pins me down to the floor of the abyss from time to time despite my rules and mind games, and it's a long crawl up the walls into the light again. I aim for the highest and purest philosophical perspective on things to fight the pull into the depths of that darkness, and just hope that I land somewhere in between.

Personally, I have a much harder time dealing with the stigmas than my physical and mental infirmities. I agree that it is more than some people can handle and they must withdraw to their own level of comfort. Because of my immune-system disorder, I have frequent outbreaks of shingles (reactivation of the chicken pox virus that infects the nerve pathways) and some people are afraid that they might become infected with "something" just by being around me or even being in my home. I think for some people we remind them too much of their own frailties and susceptibilities. Although I understand how they feel, it just makes it so much more difficult to deal with my infirmities when I am being shunned by those who perceive them as being reason to suspect and defame the nature and quality of my character, especially when it is my own healthcare providers (mis)behaving this way. This is what allows depression to get a firmer grip on me than dealing with my infirmities. Plus, the stress of being mistreated this way just inflicts more damage on my immune system exacerbating those symptoms, as well.

I'm sorry you are fighting another "flu" right now. Just rest and do whatever it takes to feel better soon. I'll check in with you later. lynn09

[paddym22]

(((((Lynn))))) You challnge me in a good way I have to say, but the fact alone that you can intellectualise your depressive symptoms speaks volumes. I can barely see past my arm. But that is not what we are really talking about, is it. You bring up some interesting points including the fact that we remind others of their vulnerability and that in itself makes them uncomfortable. I have been in an isolation room several times in hospital and that really teaches you starkly a lesson on how alone one is in this battle against the virus. People tend not to visit me when I am in hospital and one person frankly said that they felt that others thought because I am in isolation it is because I am contagious, lol, trying to explain to people that they are the threat is quite comical to me.

Shingles are nasty and I get them too, another thing to have to deal with, it is the opporuntistic infections and cancers that frighten me most. I have had PCP (Pneumocystis pneumonia) twice and how I survived it is a miracle, but I strongly believe it is the fighter in me and the familiarity of being exposed to depression and knowing how to deal with it has helped me through the more serious infections.

OK its back to the duvet and thermometer.

Thanks for this thread, you are good company

((((Lynn))))

[paddym22]

Lynn

Have you ever thought of join the chat groups here, specifically chronic conditions and pain. I go and find it great and made a bunch of friends theree, its on tueday nights run by crew? Just an idea and you would get get support.

Paddy

[michele#3]

Paddy, for that matter everyone on PC who has HIV or AIDS, why don't we have a special thread on here for people with this disorder and of course, psych problems. I imagine there must be a few people who are members of this site who live with this disease.

[susan888]

(((Paddy)))

You are a wonderful and vibrant man. I am so sorry you have to be ill....I can only imagine how this must be for a man of your vitality and love of life!

I pray for a cure, but also please know that I pray for your emotional and physical well being.

I lost two of my best friends to this horrible disease..I just wish that they had been able live long enough to see the improvement in treatment...John and Jerry were my closest friends during my teenage years and I wish so much that they were still here.

Much love to you my friend! I hope you had a wonderful vacation!!!!

Susan