Three months and the world still spins a bit too fast.

[TheNormalLife]

So here I am; not knowing where to start, constantly writing and deleting words that I would not like to be writing nor deleting; thinking about concerns I did not have a few months ago, riding emotional roller-coasters.

I think I should start by sort of removing the mask, facing the truth and telling the world (at least this tiny, little, beautiful world of people at the forum) that I am HIV positive; that even though I was diagnosed almost three months ago, I still can't handle entirely the fact that my life has changed, that it hasn't, that I am afraid, that I'm brave; that I'm alone, that I have you.

I've been reading you sometimes, feeling amazed by your warming support and wishing I could have found you before, when my world was falling apart. Thank you for sharing your life and stories and for letting me know I am not the only one.

I don't want to get you bored with the details of what it was (is?) a beautiful, normal life; I just wanted to say hi, to feel comfort and to eventually be able to provide it to others. I do sort of feel obliged though, (almost urged) to share and to relieve the pressure of my thoughts.

I got diagnosed by mid-December (awful dates, specially when here in Mexico where I am from, the end-of-year celebrations are a huge family thing). It was shocking, sad, and everything in between. Family don't know yet, and it will take some time before I tell them (if I ever tell them). Fortunately I don't live in the same city as my parents and only sister, so I can pretty much handle the implications of the day to day living and future treatment. They don't need to know right now, and I will exercise my right to remain silent as my dad has a heart condition and that they lost a son (my brother) about 12 years ago. He was HIV positive, as well. I know that I have a much brighter future and that back in 2002 when my brother passed away, the scenario was completely different but still, this condition is to be told on the particular individual perception of need-to-know basis, and this, they don't need to know.

The horrible night I found out I was infected I told my boyfriend. He initially dumped me and left our apartment as it was all my fault (I got infected in a trip I made with some "friends" to Europe, got really wasted at the bar and had unprotected sex). We are currently back together and his initial tests (had two fourth-generation) turned negative. I am crossing my fingers for his following tests to go negative as well.

Numbed (or was it shocked?) by the news, that night I drove to a private hospital and asked the shift doctor what was the field of medicine which treats HIV (yes, like everybody else I was THAT ignorant) and he gave me the name of a few he knew and recommended. That's how I found my private Infectologist Doctor. Did I spell it right?

In Mexico we have a decent free medical care. And when I say "decent" in no ways I'm implying it can't improve. Lines can be very long to get walk-in non-urgent medical attention; appointments to GP (again, for non-urgent conditions) need to be done weeks in advance, facilities are juuuust okay and bureaucracy lingers everywhere. But, hey, at least I will be able to get my medications for free.

I have a private medical insurance which supposedly grants me access to top-notch facilities and treatments (although policy excludes AIDS -yet I don't have it, and hopefully will never develop it-). However I have not decided yet to use it as it is payed by the company I work for; I don't know what sort of detailed information the company will get, how much access will Human Resources will have to my clinic information and more over, as the insurance is part of a group-policy (we are several hundred employees affiliated) I don't know how it will impact the policy cost on the group. I imagine that a +2,500 USD A MONTH (that's in about the upper-range cost for single or dual-pill treatment here) for life will not make the insurance company happy and will definitely increase the cost for future renovations, which in turn, my company could object. Oh, God, to tell or not to tell...

I haven't started treatment yet. After confirmatory tests (Western Blot), CD4 count (755) and viral load (about 5,000), my ID told me that we had a pretty good time frame to decide the treatment plan. My next visit will be this Wednesday and on Friday I'm having my GP visit at the public health care whom in turn, will direct me to the ID (public).

I'm sort of worried that I need to start treatment right away. When I read your stats I usually notice that even with strong numbers in CD4 such as mine you started treatment within days of diagnosis. I am aware that I should not wait too long, and that the sooner, generally is the better.

My private ID told me that 5,000 VL for an untreated person is not that bad, that it was quite low as it sometimes could go to millions (!), that I could expect a normal life, that I should not need to worry much, if not at all...

But I worry sometimes. I am getting over-observant of my body and health. Every little change (all of them probably normal) makes me believe it might be related to my condition. I had a rash in my arm and there I was believing it was sarcoma, when it turned out to be an insect bite. I started losing a lot of hair in my head (none in my family suffers from hair-loss). Then again, there I was all worried; it was stress.

My current worry is that three weeks ago I had a small sore inside my mouth (the kind you alleviate with Kanka) and a simple cold. Now I have it again (accompanied too with a light allergy-type cold, no fever, no real pain, just runny nose); I read that sores was a condition found often in weakened immune systems (and f&ck that scares me!). Is a +700 CD4 immune system really "weakened"?. I am probably forgetting how often "normal" people gets the flu and that occasionally in the past I had those sores due to accidental cheek biting or whatever reason. Will I be living the rest of my life with small discomforts such as those? Does an undetectable person (besides doing his/her part to stay undetectable) go through those small glitches all their life?

Anyways... I will ask that in my following medical visits (though your comments are appreciated) and thus I can't say that I'm not nervous. I am hopeful and eager to hear, that just like yours, mine will be a story of success.

I'm sorry if this text seems to be all just about me; just for writing this I'm feeling much better and I'd like to thank you for reading this far. I'll make sure to pay forward once that I learn enough about this.

One thing I can tell and conclude with. The rules changed; giving up is never an option.

With love,

Ray.
(Sorry for the English, second language).

[areobe]

Hi Ray!
In some ways your story was like mine.  I was diagnosed in December but my CD4 was much much lower... 18.  I presented with PCP pneumonia and that is when it was discovered.  December is an especially hard time to go through finding out when everyone around you is celebrating.  You just feel detached, different, and distant. 

I am glad to see you are taking a pragmatic approach to disclosure, I have done the same based on advice from this forum and it has made all the difference for me.  At first I thought I needed to tell someone, anyone, but it was mostly for sympathy - I am glad I did not. 

It does feel good to get it out, to release it, to be able to exhale and breathe once again.  I am glad you have the support of your bf now to help you through this.  As you have read over and over here, it does get better with time.

Your story, whether you know it or not, is already 'paying it forward' as you say.  Someone else is reading it right now. Someone who just got diagnosed and is wrestling with the same feelings you have been through.  Someone who appreciates the support you are already giving them by telling your story.  They will reveal themselves shortly, and you can smile because you played a part in their dealing with this.  Thank you for sharing your story. 

Ahora es el momento de pensar en el futuro con cada día que pasa. Un paso sigue a otro como el viaje de tu vida continúa.

Carpe Diem,
robert

[mecch]

Hi welcome here.
Sorry you got the butt flu. But thats life.
Your doc is correct - plan on a normal life.
Your numbers are fine. No rush to treatment. It breaks out like this: there are advantages to treatment soon after infection. You dont say when your trip was. 

However, people with good numbers.  6 month after infection. 1 year. 2 years after. If you have good numbers it probably makes little difference.

You have to answer the questions about disclosure before you start treatment, anyway. I mean - you seem to be worried about the fallout professionally if your private insurance company knows.   This seems to be a rather technical consideration and you might try researching HIV+ support networks in Mexico to get someone who really knows how this goes down and what the stakes might be for you.

Generally, a rule of thumb for everyone HIV+ - is get what you need, as a priority. iF there is NO personal risk to your career that your insurance company knows that you are HIV+, then who the fuck cares if the insurance company must shell out 2K a month for your drugs.... Thats their business, their balance sheet, not something for you to worry about.  Only worry if there is spill over to your job security and I will assume that legally you are protected, though we ALL know gossip can circulate and damage done, who cares if its illegal.

So always remember, the treatment of HIV is VERY STRAIGHTFORWARD and completely mastered.  Its all the shit and complications society heaps around the HIV+ status.  So always remember - get what you need to live well - society be damnned, or society is a secondary consideration. Yes, that is part of the lesson your brother's death leaves you.  All of us, myself included, who had people die when treatment was late or imperfect, or GRUDGING, that's our lesson - now we know - get the damned drugs when we need them, take them everyday, and peoples shit about that, its secondary.

[TheNormalLife]

Thank you Robert; your words are much welcomed and needed. Sharing outside of the very inner circle of trust feels great. I am very glad to see that from 18 you are now in a stronger 189 CD4. Congrats! 

Mecch: Thank you for your time and words. Got infected in late September, by early to mid October I had the worst flu of my life; I was feeling weak and uninterested in things. After some antibiotics I was feeling better. Got diagnosed Dec. 19th. Tomorrow is my third ID appointment, we will define the treatment options.

Yes, I'm a bit concerned about the professional fallout if co-workers know; the insurance company will definitely do so as they will be spending the money, but about them I really don't care; that's why they get paid for. I'll see how efficient turns out to be the public health care; my ID and HIV psychologist have told me it is quite efficient, aside from the sporadic waits and lines.

And I will follow common sense and your straight-forward advise. I'll get whatever I need to be fine.

Huge hugs to all!

TheNormalLife, Ray.

[Tonny2]

       ojo       Bienvenido Ray, estaras bien...you are going to be fine, its normal you feel this way, every little thing you notice, you will think is bad, but, trust me, with those soldiers (cd4) you have a normal immune system...make a list with all the questions you may have, even about the "seguro popular" and your private insurance, he might be able to help you...about to disclousing, you will know when and if you want to do it, just digest the bad news first (being dx), ...now, you are not alone, you can count on us, and if you need to talk to me in Spanish, feel free to send me a PM...you are in the right place, here, there are lots of people who will feel your pain and will be there for you, va?...wishing you the best, and I'm sending you a big hug, because you need it, its a virtual one, but, trust me, it helps.....ojo

[TheNormalLife]

Tonny: Thank you for your kind words. And your are absolutely right, that virtual hug helped a lot.

I think it is amazing how you provide help and comfort to others, that's something I'd like to do, once I have walked a bit down the path of experience and healing.

Again, thanks.

Ray.

[tednlou2]

Ray,

I'm sorry you tested positive, but glad you found us.  First, your English is great.  I wouldn't have known.  Second, don't apologize for "making your post all about you."  It should be all about you and your situation. 

You have very good numbers.  5,000 is fairly low, when compared to people over 100,000 to over a million.  Do you know your CD4 percentage?  I would expect for that to be fairly decent to good.  U.S. guidelines now say to start regardless of CD4 count.  You have time to get out of the shock and make sure you will be adherent and that you will have a reliable supply of meds. 

I completely understand you not wanting to tell your family, especially knowing your brother was lost to AIDS complications and your dad has heart issues.  You know your family and whether this would be much more a trauma to them, than it may be for other parents.  It often depends on how much knowledge family has about the virus.

I can also relate to thinking every ache is something to do with HIV.  Some may be; I don't know.  But, I bet most are not.  The last few days, I've been messing up words, when I speak.  It happened several times.  I wondered whether the virus could be causing that.  But, we also changed time Sunday to Daylight Savings Time and lost an hour of sleep.  I think it really affected me this year. 

Keep in touch,

Ted

[Tonny2]

Tonny: Thank you for your kind words. And your are absolutely right, that virtual hug helped a lot.

I think it is amazing how you provide help and comfort to others, that's something I'd like to do, once I have walked a bit down the path of experience and healing.

Again, thanks.

Ray.

           ojo      ni lo menciones, here we are to support each other, take your time, and you will be able to support others...more hugs    ojo

[TheNormalLife]

Thank you Ted, Tonny and all of you for your beautiful support.

Third visit with my private ID went well; he checked me here and there, asked a few questions about how I was feeling and ordered a new set of CD4 and viral counts. Let me remind you all that I haven't started treatment yet as my numbers are good, my ID' advise and as I'm still paving the path to acquire my pills in a consistent, trustful manner.

My new tests will be ready in a few days, just in time for when I see my public health care ID (institution which will provide me with my drugs). Despite my appointment is around the corner, I am not expecting to begin swallowing pills for quite some time. My private ID told me that most likely my social security (health care in Mexico) will wait a bit (slightly outdated guidelines, I guess). Anyway, he assured me that I definitely will be on the meds way before I reach 500 CD4 (I'm in the mid-700 right now).

He mentioned a CD4 degradation approximation, in average of 70 per year (under no treatment). Have you heard something about it? Anyways, we are not using this rule of thumb, hence I got sucked three tubes of blood this morning for processing.

I've been actively reading, participating in this forum and discussing this new life with my therapist. I am, you could say, "engaged" in the new rules of the game, yet I felt disappointed with my ID's attitude. He was a bit distant and cold. My therapist whom knows him, told me that it was quite normal among specialists.

Or was I trying to have the spotlight on me?  He wasn't rude though, answered all of my questions and concerns but didn't feel he went the extra mile. You all talk wonders about your IDs so I guess I was expecting the same patting in my back.

Anyways, here I am writing too much. Thanks for dropping a line; you have all been very important in this process.

Hugs from south of the border,

Ray.

[Tonny2]

        ojo       Hola Ray...my relationship with my ID doctor is great )after 20 years you would expect that), and yes, I think you should feel comfortable with your ID doctor, because you are dealing with your health and most likely, you would be seen him for a long time...your numbers are great (que envidia, de la buena, lol), but, it will be better if you would start treatment now, but I guess, it is what it is, in our countries, anyhow, you will be fine...I've read you particpating on this forum, sharing your experinces with others, it will help you and you are helping others, GOOD FOR YOU...ok, I wish you the best of luck with your visit to the ID doctor (public one), and if I were you, I would ask him the chances of starting meds ASAP, a friend of mine was taking ATRIPLA, at least is a newer drug, I know pwople from other countries who are getting AZT still...anyway...hugs                ojo