Recent Emails

_______________________________________________________
Received May 8, 2009:

Man. So glad you were able to open up a little. Couldnt tell from your first emails if you were cool with that. Sounds like we have a whole lot in common... just by reading your messages. I've got such a complicated story, wouldn't want to bore you. I can say that I believe things happen for a reason...maybe like us talking. I don't have any type of support group I go to, and never have. Not that I don't believe in them, but I live in a city outside Atlanta. People know me and my family, but don't have a clue about this disease. For all these years, I've been traveling over 100 miles each way just to see my doctor. So, I say that to say it's good to have people to talk to... even if online or phone, etc. Guess it's good to talk things out. I get so so lonely sometimes, I don't know what to do. And, when you say schedule one thing a day, I almost fell out my chair. I do exactly the same thing. Even if it's stuff around the house. And, I even set a time. Like today, I was going to head to Walmart @ 230. But then I saw your email and wanted to write you back first. But man, I can totally relate. I get so tired, and nobody understands. My immediate family knows about my situation (mom,dad,etc), but that's about it. They live in metro Atlanta, so we just email and talk on the phone. I see them maybe once a month. We don't talk about it, unless I go to the doc and they wonder what the lab results are. I really know what you mean by lab results. My Cobra coverage expired in March, and now I have no insurance. I can't pay for the labs out of pocket. It's really stressful. But before my insurance expired, I had them every 60 days. My last ones in March had tcell about 400 and viral load only around 100. As you can imagine, they have been much much worse. Matter of fact, was really bad in January this year. That's when she changed my meds again. I'm about to be 43 in a couple of weeks. Guess we are both young ;) How long have you been with your man? Is he poz (just tell me to mind my business if you want). Just wondering how yall work it out. I've been on Atripla before....and I'm thinking that also made me really tired / depressed feeling. I might have some if you want it - just let me know. I dont know about the other two you're taking...not by that name anyway. Right now, I take Isentress, Intelence and Viread. My last genotype test showed I was now immune to all other meds. My doctor said the only hope was for them to create new ones. So, that should be good news for you... Your immune system should be working for most on the market - and that's great. You just need a really good doctor that will change when needed. And, get you off the ones you don't like. Anyway - sorry so long. I really hope you get the answer you're looking for - like you ask, what's my viral load - and they say what viral load... ;) Write soon as you want. Ray

_______________________________________________________
Received May 7, 2009:

I found the following online at: http://www.disabilitysecrets.com/page8-10.html They are going to look at pace, persistence and concentration. They want to see if once you start a task, if you stay on task. For example, reading a book or watching a tv show. Can you watch a tv show for the full time and stay with the story line, things like that. Also, memory. Can you remember what the plot of a movie was, or a book you read. Something like that. Also, can you stay on task, say like following a recipe when preparing a meal. Can you balance your checkbook. I am a former Social Security Disability Examiner. That is the type of questions you will be asked. Also, if you have a history of mental health issues, like depression or bipolar disorder. Do your mental health issues interfere with your activities of daily livings (ADLís). Or interfere with your ability to earn at minimum levels to support yourself. How do you do with grooming, cooking, cleaning, normal activities of daily living. They will ask your friend to give examples. If you are sure you meet the listing for HIV/AIDS under the physical then the mental is not really important. I havenít been an Examiner Since around 2000 so maybe some of the rules have changed. Just so you know, when I was doing disability determinations and someone met the listing for a physical issue, I was able to stop right there and allow them disability. The only time I would continue to look at other issues, such as mental, was when it looked like someone did not meet a listing. My guess is that if they are moving forward with the mental side then they must not plan on allowing you disability for the physical side. Final note. IF you are denied, make sure you apply for a reconsideration. IF the Recon is denied, take it too the next level, meeting with a hearing officer. At each step your case will be handled by someone at least a little more experienced and more able to allow disability. Itís been a while since I worked in that area. I hope this helps a little. Rick Crist Arizona

_______________________________________________________
Received May 7, 2009:

If you are filing for social security disability (SSD) or SSI benefits based on a condition that involves depression, you should take every step possible to back up your claim with solid medical evidence. This is true whether you are listing depression as a primary disabling factor, or as a secondary symptom of a broader ailment (for example, chronic fatigue syndrome or chronic back pain). Many individuals who list depression on a disability application have not recently been treated for their condition, and some have no record of ever receiving treatment. Without recent medical records from a qualified mental health provider (psychiatrist or psychologist) to confirm an ongoing state of clinical depression, the disability examiner or administrative judge attempting to evaluate the claim will have no choice but to order a consultative exam (CE) to determine your current mental state. Consultative exams are medical exams ordered and paid for by social security. In the case of depression, a mental CE is ordered with a psychologist or psychiatrist who will provide a current, full psychiatric and psychological profile of the claimant. However, if you have listed depression on your application but have no prior history of treatment for your condition, you will likely be sent to a mental status exam, which is generally not as in depth as a full psychological profile. The mental status exam will simply supply the examiner or judge with an overview of your current mental state, including observations about demeanor, speech, memory, alertness, ability to concentrate, and ability to adequately interpret simple concepts, etc. It is rare that a mental status exam will provide a claimant with enough medical evidence to qualify for disability benefits. Yet, as with all consultative exams scheduled by social security, you have no choice but to participateówithout recent medical evidence your case cannot move forward, and refusing a CE can in itself be grounds for dismissal of your claim. In addition, a mental CE can be helpful if you have a documented history of treatment for depression if it confirms what your medical records already indicate. Because it is unlikely that a mental consultative exam will provide enough evidence to support a diagnosis of clinical, disabling depression, those who plan tofile for disability based on this or any other mental impairment should be sure to see a mental health professional who will provide a medical diagnosis and record of ongoing treatment to support their claims. In addition, it is critical to take all medications for depression as prescribed by your physician, since failing to do so can result in a denial of disability benefits.

_______________________________________________________
Received May 6, 2009:

Saw your question - sorry, I'm no help with that, but.... I clicked the link to your blog and read it.... Enjoyed it too! Then I just felt compelled to drop you a quick note. = ) K... My experience with being HIV poz is worlds different - it is different from most people I've heard or read about. Mildly traumatic at first (14 Sept., 2005) but since then..... Met an amazing doc. Got on meds (Truvada, Reyataz, Norvir) that had NO side effects (really... NONE!), got back to work within a couple weeks and pretty much went on with life. Met a guy (Juan) less than a year later (he's HIV-) and we've been together since 20 Nov., 2006. I live and work and play and travel and play and play (& play and sail & ski & hike & play in the sun and laugh and play!!) and do stuff pretty much like before the dreaded "diagnosis". You could never tell by looking at me or by how I live and act that I'm 44 and I'm HIV+. Day-to-day, the only change is that I take my "vites" with my lunch. When I tell new people, they're kinda shocked, then they're like, "cool dude! I had no idea that being HIV+ could be that easy, normal and fun these days!!" Yeah, I'm a freak, the exception to any rule, but... I wonder if EVERYONE is the "exception to any rules" too!!!!.....? Yup, I really wonder.... Just wanted you to know that nobody's experience with HIV has to be yours. Not mine, nor anybody else's you've heard or ever will hear about. Period. Write your own script with this buddy! Day by day... just live. See where it takes you. My doc said those words to me after a few months - glad I listened! I felt guilty for a while... went to a couple "groups" just cuz I thought I should - maybe I was repressing some shit or something.... I felt like it was just too easy, too normal or something.... Gave up on that shit. For ME.... HIV is a minor inconvenience. 3 pills, once a day and a check up 3 times a year. About 1/2 the people I know and come in contact with know - the others.... well, it's just never come up in conversation, though I'm really not hiding anything. Your path?.... Your story...? That's up to you and those you love. Just wanted you to know that YOUR story is more up to you than you know. Be open to a "story" that REALLY makes your life great in ways that matter to you! Please? = ) Be well Mr. "djones"!! = ) Long day.... Off to bed now. Nite! ~Ian

_______________________________________________________
Received April 30, 2009:

Hi Dave, How is your day? How are the dogs doing? I have to tell you the seminar was earlier today and was a great success! Many science faculty attended, as well as students, many great questions asked. This was interesting though: okay, so I already mentioned that my university is an evangelical Christian college, and homophobic attitudes are far from being a rarity. The university president who attended, was very angry with me because I mentioned that Chrisians have not been active in supporting HIV/AIDS individuals... but I stood up to him, and later many students told me I was brave enough to tell the truth about Christians' lack of involvement, and a few of them have just realized it after attending the seminar. So hey...the awareness message got through! I am very happy. Why don't you write in your blog more about yourself, your hobbies, your past, etc, Tony and what his character is like? Your HIV updates are great, but it would be nice to know more about you too for strangers who are reading your blog. Maybe it's on that new website you're making-I haven't checked it out yet. I'll be following your example too, and starting my own blog, so thanks for the idea! And lastly, do you have a P.O. Box? There's something I want to send you from the seminar that I think you'll really like. Anyway, again thank you so much for letting me use your blog, it made the seminar a lot more involved. Sorry for the long email... Your Seattle friend Gillian _______________________________________________________

Received April 30, 2009:

I just stumbled upon your blog and can't wait to begin reading more of the "archives". I am turning 48 on Sunday, and was confirmed POS last December. I'm trying to put up a good front but inside I'm dying. I don't have a Tony in my life. I have a friend who has invited me to move in with him as roommates, not partners. He's negative and afraid still of the unknown when it comes to me and my status. I'm feeling fine...no real symptoms. I have only told 3 people of my status. No one in my family knows. I was married for 22 years, acted foolishly last summer after my divorce and now am paying the price. I am particularly interested in reading your posts to learn how Tony reacted and supported you. I need to get back to work...but I wanted to say thanks for your blog. Ken in Akron, OH _______________________________________________________

Received April 23, 2009:

hello dave my name is anthony i am 21 living with hiv new to it. i get so lonely sometime where no one can help me through it my boyfriend will never understand how hard it is for me , he get sad to know . i have told a couple friends and my parents but none of them really care, my boyfriend is my only support i think if i lose that i will go crazy. please dave help me in some way i dono what to do , like what i need to do with my health,everything i am new. thanks so much please write back _______________________________________________________

Received April 23, 2009:

Hello again Dave! No, sometimes it just sucks, and is completely overwhelming. This disease is a double hitter Ė itís a challenge to fight physically but also mentally. There is so much shame that comes with it, and that is so counterproductive to healing. Weíve been together for 5+ years, and he found out he was positive nearly 6 months into our relationship. It devastating for him, and I had to go through testing and wait nearly 6 weeks for my negative results to be truly confirmed. Even that was bittersweet, because I then felt he was deeply fearing I would leave. On top of that, we were long distance with me in Minnesota and him in Florida. But my internal decision to move forward with our relationship was really based on him and me together. I had dated a bit and met a few guys, and also had some tough relationships. But with him, I just sensed something bigger. For the first time, I really felt that he saw who I was for what I am, not for some ideal boyfriend I could measure up to. So when this happened, I asked myself if this was reversed, would he leave? I believed he wouldnít, and honestly, Iím not sure Iíve met a guy who wouldnít. Then I thought, geez, heís the SAME guy, only going through this awful thing. It didnít happen overnight, but itís a decision Iíll never regret. If you walk through life fearing anything life-changing, then youíre not really living. Besides, you can never outsmart how the world works anyway. The real challenge was actually to come later. We finally came together where we are in Florida, and for the most part of the last 4 years weíve been good. Where weíve had problems is when he was recommended early on to start medication. He didnít want to. That was the first year. As time went by, I was hoping he would accept the idea of medications, and I pushed a bit. Still nothing. When he talked about it, he said he wanted a more natural approach. The tension started to build because I saw he was actually doing nothing at all, so we had then chosen counseling. So for a couple years, we went to counseling, where I learned to respect his wishes for more alternative and natural forms of treatment. But in reality, he wasnít doing anything. In fact, I believe all along he has been severely depressed. I kept trying to see if he would see the counselor for himself Ė not about us and our relationship, but just about his needs. I had started to have thoughts that I had made a huge mistake by continuing our relationship. My mind was filled with fear regarding his health and lack of attention he was giving it. I poured myself into my business, and have been doing quite well. He became resentful, and actually told me that. We were really hitting some rocks. Late 2007 to early 2008 brought another challenge to us, and one I just couldnít have foreseen. My 6 year old Rhodesian Ridgeback Killian had been diagnosed with an aggressive fibrosarcoma in her rear left leg. Despite our best efforts to save her leg (amputation was prescribed), she had the surgery to remove it. She was brilliant throughout, and never needed assistance at any point after. She really showed us both how to overcome and still have a great life. Sadly, the cancer reappeared in her spine in 2008, and I had to make the chose to free her. They say that was doesnít break you apart, brings you together. I really thought we were on shaky ground before everything happened with Killian. But the truth is, it brought us together. After the loss of Killian, I was lucky enough to come across a book that really changed my life and help deal with the grief of losing Killian. It actually helped me with so much more. I donít know if youíve heard of A New Earth by Ekehart Tolle, but you may find it interesting. It is essentially based in the philosophy of living in the now or moment, and when we find ourselves paralyzed by fear we are actually not really living in the now. Thereís a lot more in the book, and since it was featured on Oprah, there are free podcasts on iTunes you watch where the author discusses the book by chapter. Well, Iíll share more with you, but Iíve got to get some work done. J I hope you feel connected today to others that walk with you in this challenge. Your choice to start a blog to communicate was a brave one Dave, and Iím very thankful you did. -Al _______________________________________________________

Received April 15, 2009:

Hi, Dave. I'm glad your partner did okay with his bypass surgery. Having been a RN for almost 25 years, I know how hazardous that can be, and yet must be done. He sounds like a prince, and I'm sure he feels equally blessed to have you. If he did not, he would not be the supportive man that he is! FiFi sends a "bark" to all of you. (I raised her to be a good little "Southern Belle" and to know her manners!) She appreciates the compliment, she wants you to know. ;) (Ain't it grand, "interpreting" for them!) As I told you, my CD 4 is over 1000, and my VL is non-detectable. Both Combivir/Sustiva, and Truvada/Sustiva (which later became Atripla, per my request), worked just as well, for me. I had the liver issue, which no one could find an official cause for, of course. CT scans merely showed how (painfully) enlarged it was. No tumors. Liver enzymes were negative. No one had any explanation. To this day, I believe it was the AZT in the Combivir, since it went away in 2 weeks after I temporarily stopped medications. You might, or might not know, that there are actually two theories about treating HIV. No, I am not talking about the "denialists" who deny that HIV causes AIDS. I am talking about medical theories. One theory, the older one, is the hold off on starting medications until you MUST take them, when your CD 4 is low, because of the side effects of the medications. The newer theory is to hit it hard, fast, and soon, immediately, when diagnosed, to delay or prevent going into full blown AIDS. BTW, all recent studies show starting medications immediately drastically improves one's quality of life, and the "reasons" for "waiting," as it were, until one "had" to take the medications, are less and less nowadays, as the newere medications are far less harsh than the oldest ones. At first, I chose the medications. After the liver issue, I refused, and wanted to do the "wait & see" thing (the old theory). Then my lungs went on permanent vacation (Idiopathic Lung Disease/Lyphocytic Interstitial Pneumonitis) at about 50% capacity, and my lung doc said that I no longer could take that risk, that one round of PCP would kill me, and I needed to restart my HIV medications immediately. Which I did, but I refused Combivir. Thus Truvada/Sustiva came into my life. Atripla is merely the combination of Truvada and Sustiva into ONE pill. Thus, I asked for that. At the time, I was still employed, on standard insurance, and that cut my cost in half, as I had to pay $40 for Truvada, and $40 for Sustiva, and I could pay just $40 only for Atripla, and get the same drugs in my system! That explains that. Later on, quite to our (mine, & all of my doctors) surprise, I had a "silent" heart attack, and developed some Congestive Heart Failure. (We found the heart attack quite by accident, with an echocardiogram! It was already an "old" one, officially, and I was already "healed" from it! Never knew it hit me!) Thus, my medications were rejigged again, for that, and I went into Pulmonary Rehabilitation Therapy exercises, where I got some strength back. (Which I lost after the heart attack, actually.) Before those 8 weeks, I could not walk through the grocery store. I would gasp for breath even with my oxygen on, and have to ride the electric cart to avoid that. Now, I can walk through the entire grocery store. Mind you, not all that fast, but I do get there. Plus, I put my "portable" (?) oxygen tank in the toddler seat of the grocery cart, and take that load off of me, too. I still find driving 120 miles round trip to my HIV doc, 90 miles round trip to my lung doc, or 60 miles round trip for my primary doc, rather tiring, and once I'm home, I'm pretty much ready for a long nap with FiFi. Well, that's enough from here. I will say this: you are entirely right, Dave. People who do not walk in our shoes cannot understand. Not at all. I learned a long time ago not to expect them to, at all. Probably the most offensive to me was something a so-called "HIV specialist" (Immunologist) said to me. I was still working, CD 4 over 1000, non-detectable VL, and I had gotten sick, again, with non-PCP pneumonia. It was my FIFTH time in one and one-half year! I was crying, in tears, when he made rounds, and said that I did not understand, that everyone said I had "full" immunity, and why was I getting so sick so often. He literally turned his nose up, with this haughty arrogant look about his face, and said, "We look upon this like any other long term chronic disease, these days, like diabetes." Well that really pissed me off, especially because I also have diabetes, and I could damn well tell him that having diabetes was nothing like having HIV. Imagine that, an officially billed as an "HIV specialist" because he was an "Immunologist" doc, talking like that, and that being his only answer to my emotional distress. I might add, from then on, for several months, he and I were terse with each other, when around each other, "professionally" - he realized he'd pissed me off, and he got belligerent. So, do I understand? Totally. More later, someday, sometime, I am sure, for both of us. Later, FiFi & Me - Just The Two Of Us. _______________________________________________________

Received April 15, 2009:

Hi Dave, I come from Malaysia, and has been in Singapore since 1986. All former British colonies have the law against gay sex. Last year, we tried to get that law (S377A) repealed but the christian rights won. In a way we won, too, because now everyone has to acknowledge there're gay people here. There're gay bars and saunas near the banking district. I think as late as 1980s, the operation of these were still a bit cloak and dagger. WRT living in fear, I guess it depends on the person. I know plenty of people who are very closeted. I also know plenty of people who are in-your-face out. I don't think the government censor is interested in my email. :-) Bigger fish to fry! My blog: http://leejean.livejournal.com/ The censor banned 100 websites, I think, mainly those to do with porn. I can get The Body, no problem. When I first came out, which coincided with Singapore opening up with bookshops bringing in gay books, I thought I'd have to move to San Francisco to meet other gay people. So, yes, I'd thought about moving to US. :-) Take care of yourself. Gwo Yinn _______________________________________________________

Website Hosting
Website Hosting