Talk to me damnit. Talk to me. Don't talk to my numbers. Talk to me. I am the person sitting in the room pretending things are good. The numbers are static deviled details.
Stop staring at the smudges of computer printed ink all neatly lined up in a nice column. They are numbers. I am not. Numbers lie. They are nothing but medical markers to make you happy. Yes, they make me happy too sometimes. But today I want someone to talk to me, and remember numbers lie.
My numbers have tumbled to horrifying lows and I felt fine. They have blazed off the page and my world turned to shit.
Today is one of those days. But it is no longer just a day now and then. Twenty years of pills has taken its toll and I want someone to talk to me - not my numbers.
I have swallowed 98,550 pills that I can easily count in the last 18 years; the real count has got to more. Much more. My pills are toxic but they save my life. Or is my life toxic and the pills are just hobgoblins that slide down a throat?
I am witness, prosecutor, and defendant in this AIDS battle. I am also one of million walking wounded. Most days I can tuck those wounds away from view. Other times they ooze out of every cell in my body.
I provide AIDS medical care to others; others provide AIDS medical care to me. I come and go in the same room and often do not have a clue as to my whereabouts.
Someone talk to me. My numbers never talk back. Find out what is hovering beneath the rehearsed and shinny surfaces. Nice clothes, muscles, and manners hide a lot of dents in the armor.
I often don't even want the impossible. I just don't want to be dismissed. Forget what the numbers say on the paper flipping out of your printer. In between the nice neat rows of lab data are there are real "values"? Do you know about my daily dry heaves? My constant and chronic pain that nothing touches anymore. How the sudden and paralyzing fear of it all comes out of the blue and cuts deeply into a vein.
Where is the cure? My numbers and muscles may give you the false hope all people long for in a never ending disaster but what about my nausea, fatigue, and shortness of breath.
Stop talking to the numbers. They are the surrogates of fools. Numbers go up and down. They multiple and are linear. Nice and neat. AIDS is not. AIDS is jumbled, harsh, and painful.
If I could I would take all the Red Ribbons and bind them together into a noose. Let's see who wants to swing from that?
Ric,
Only "us" can share your pain. I wish everyone could understand what we go thru... even thou those "numbers" are "good".... good for what?????
Richard,
Your words could not be truer. I have thought the same thing many times. I love reading your blog. Your patients are lucky to have you.
thanks so much for those two simple, concise, perfect sentences. 'talk to me. don't talk to my numbers.' i know those words will change the way i deal with callers and clients here tomorrow.
Dave, let me know HOW it changes anything. Out here in cyberspace I often feel lost. Like my T cells just being in orbit. I would appreciate some grounding.
Many look at me and I know they are saying that I should be thankful that I am alive after 23 years of living with HIV/AIDS. I though am with you that it's hardly living at times. I used to not say to people how difficult it is for me, with the constant pain and fatigue. Now I don't sugar coat my words and I insist on being heard. I push for that with others who are living with like you and me. Thanks for this honesty.
good read,really enjoyed,but I'll forgo the noose brother.
The totally understand your anger and frustration, but you directing it as the WRONG doc. You must a therapist or psychologist you can vent your rage at. AIDS specialists, blood tests, CAT scans, and liver biopsies serve their propose as well. And yes, I've suffered like you and all your commenters on this web-page, from toxic meds causing liver cirrhosis, diarrhea so bad I was wear adult diapers for two years, etc. My take, have a support system: AIDS specialist, psych, therapist, nutritionist, integrative pharmacist, Chinese medicine, whatever works for you. I still agreed with you that AIDS fucking sucks.
David...what makes you even think I DON'T have all those supports in place. Frankly, your comment just plain pisses me off and that is hard to do these days. So piss off yourself.
Paolo...Thanks for pushing your truth. I think if more of us did then the "talking to numbers" game would be tossed a major curve ball. The AIDS "tribe" is now a forgotten lot and our silence once again is killing us slowly and steadily
.
hi there
from now on i will read regulalry because i find worth it...god bless and keep writing.
I am from budapest being hungarian male and poz.
greets:zsolt
Thank you so much for sharing your concerns and heavy bearing side effects from the HIV meds.
I as my HIV doctor why I am I always tired, morning bouts of nausea, even in her office. Just add more meds to the list. Then I take the med for the morning sickness and within an hour I vomit the medication. They have no direct answers, all they know are numbers. Don't worry people wish they had your numbers. But why did I undergo a quadruple by-pass in 2000? I told her that I am sure it was the HIV meds. No, no no....
It's genetics. Yes, but why I am undergoing all the sickness of my family line at my age? They can't answer that but your numbers are good. Screw the numbers I still have to be in the hospital once or twice a year for some illness that my grandparents had when they were in their eighties? No Answer....
So I leave the office with, I have good numbers, and that is going to make me fell better.Between HIV meds,and all the other meds for pain, heart etc.I take thirty two meds a day. I don't even want to count how many a year from 1994. Yes, I am living, but is this life?
When your in the hospital, you are placed on a HIV section.. Ok.. fine I understand. But why do I have to fight for my HIV meds. I was just hospitalized last month, for dehydration in connection to our once a month diarrhea. Why can't our HIV doctors tell us the truth?
Hi. You don't have to go through what you're going through. Medical Biomagnetism (Dr. Isaac Goiz of Mexico City) cures HIV/AIDS. Please check it out, there may be a practitioner in your area.
Best,
Liz
wow, can we say bitter betty party of one plus all his numbers? I mean really...we can all stop taking meds and let the inside of us live it's life and kill us at 30..or we can somewhat use those numbers and results as a small portion of information of what is going on inside us and allow us to further help ourselves live longer.what the fuck one would you want. Preferably i'll take the live longer option dr! What's the point of being upset at the world....where's it gonna get you. remember, stress can kill too. Another thing to remember, some of us got ourselves into this mess and have NO one to blame...(i will say i'm one)..but do i ever blame anyone..helllll NO. I get up every morning on my feet, be thankful i'm alive and i can walk, see, smell, hear...and i take my meds. Some people are worse off than you..
REALLY.....MEXICO before the U.S LOL
i would think that would've hit mainstream media FAST
Well YES! I am too in that state of mind. WHY is it my numbers that Doctor's and health care person's talk to. I am the patient. I need to know my numbers for what. I am healthy! I have been POZ for 20 plus years and my Tee's have hit 100 give or take 20. My viral load has jump to beyond words.
Yet I walk into a clinic or an agency or a meeting(ORLANDO EMA). As well as church. I get well you look good and your numbers are improving. Well what about me. What about what I am feeling because I am single for fear. Fear of burdening another human with my life. With my aches and pains. With my financial situation because of the HIV.
How does one get past the guilt of causing another to suffer!
My heart aches for all of you, but bitterness and blame won't improve the situation. In defense of the medical arena, they are so busy that most cannot take the time to do more than the perfunctory details. I don't have AIDS. My son does. I have been witness to all the symptoms you describe. I have seen the depression, the sickness, the anger. Being part of a support group can be very uplifting, even if it's online. Keep a journal, spill out all your frustration, anger and pain. Just letting go of it should give you some relief. There are many of us who understand your pain and your grief. We who support you bear our own grief. My daughter has end-stage renal disease. She's had ten surgeries just this year. She's recovering from a staph infection in her blood stream, a condition that has a 25% mortality rate. She just turned 41 and may not see 42. As her mother my heart aches for what she endures. She has known pain and suffering since she was an infant. Yet she values her independence and refuses to come and live with me or her siblings. The hard part is that she's in another state and lives alone except for her animals. She continues to work three days a week. I just returned from a very short visit to see her. She is so clever, so artistic making something out of very little. I only write this so you know I share your pain and your grief. But it's not a perfect world. What matters most, I think, is how we carry the crosses that are thrown in our path. God bless all of us. Just know that people do care.
Craig - do your best to get rid of the guilt. Honesty is the best way to go. My son and his husband met online. Both were honest with each other. They've been together ten years and cherish each other. They moved to Canada because they feel more accepted there. Their doctors felt they were on too many meds and took some of them away. They seem to be doing well without them. We can't change what is, we can only bear it. Each day is precious. Live for the sweet moments.
Dear Zsolt: Help me please...talk TO ME. I need to hear from people like you. I cannot imagine the struggles you face in daily life from my comfort zone of life. Please share your experiences so maybe I can learn and grow to be a better man. Ric
I liked the blog. Honestly I have not been diagnosed long enough to know much of anything. What I do know beyond a shadow of a doubt is that I am scared. I have recently made some good friends who are walking with thought the new drug side effect stage. Many have even advised me how I might be able to face my financial concerns. All of this, I appreciate more then I can say. However as a person who historically has been blessed with a really good immune system I am not used to the ongoing stomach issues, rashes, constipation and all in the name of giving my immune system a rest. I am tired of being physically tired and it scares me that I have only been taking the drug for about a week.
Hey Liz...I am leaving your outrageous comment on the blog for a laugh. Cure AIDS? You can cure AIDS? Did I miss the second coming somehow? People like you make my skin crawl. Stop with this bullshit and tossing false hope at desperate people. It is just what Hitler did. You comment made me sick to my stomach.
Hey LS...you are entitled to your opinion as am I but let me make one point crystal clear to you...GO FUCK YOURSELF ABOUT 'some of us got ourselves into this mess and have NO one to blame'! If your head is still in the blame game mode enjoy taking your pills and feeling like blame ourselves is good thing. There are very few diseases without a "behavioral" component yet we don't blame diabetics or women with cervical cancer for their "state". Take a deep breath LS and do some soul searching. In many ways I am very happy you wrote. Let the fireworks begin as far as I am concerned but you can take all the blame shit. I ain't playing that tired and dumb game for anyone.
I love your last posting...amazing use of words to describe how many of us long term survivors feel. Thanks for sharing them and please keep posting!
nelson
Been there a lot this last year. 23 years of pills and wondering, thinking I was on top of handling all this life and I find myself back at the beginning and putting it together again. I am not about to trash your feelings or label it blame or anger. Just want to say with all of what you are going through, I am going through and the rest of us go through we are still living our lives vividly. A Buddhist monk told me AIDS is a blessing, a chance to face fears and see each fear as they are, none are as scary as HIV diagnosis was in 1986. Being pissed and hopeful and cynical and clear headed all the same. I am not afraid anymore. Thanks for your thoughts.
Nelson, I am honored to know that you read my blog. I have been a champion of your work with "Built to Survive" and it greatly influenced how I changed my life, my body...obviously my mind still has a long way to go...but that is okay. If I can grow my muscle I can still hope to grow my mind. Also, let me say to all my readers building your body helps with your viral life. I know that no matter how bad times get (and if you read me you know they do get bad) one of my major saving graces has been working on my body. It is not the best but it is damn good; I look better which makes me feel better. Nelson has a lot to say in his "Built to Survive" program...read it. But most of all do it. I think my mantra today will be "sobriety, God, and muscle". Thank Nelson.
Bob, My life is a good one. I sometimes write blogs the melt up from my heart after spending my day with my HIV positive patients. Sometimes, I suppose, I transfer the melded feelings of the exam room into an essay. But that is okay. I know this is going to sound self serving but my blessing is being HIV positive myself and practicing HIV medicine. I think my "take" is just a world different than the negative provider's take (with no disrespect intended at all)...I have often joked that "I wish I could see me for my medical care..." Weird, I know. But welcome to my world and keep reading. Healing through words is sometimes more nourishing for me and those that read them than pills can ever hope to be. Peace.
how'd a tough guy like you become so controversial? i'm gonna keep working out so i can look like you one day.
You're a talented writer. I can feel your struggles with you. Keep the faith and try to keep good, uplifting thoughts.
Richard Ferri; my compliments on your article! I want to write someday like you. My talent is just coming out of the shell. I am nurturing it and developing it. Reading your articles inspire me extremely much!. I'm HIVPOZ since the late 80's and now I posses a 100%POZ attitude. Not cocky but confident. I like your style and I hope that mine will translate into a similar fashion. Including this one, I had now read only two of your articles but you already touched me. Numbers; great subject! they are everywere and we are all around them. What do they mean to us and what do we mean to them, I wonder. I would like to brainstorm one subject together. Interested? Thanks for your insight and 4 reading my comment. Raf aka dj_rafie@yahoo.com. "I must stay outside of my head, If I want to survive this crisis" -rafie'09 PA USA.
Scott...remember tough does not mean indestructible. Tough mean bullheaded sometimes. No one has ever said they want to look like me one day and I am going to accept it as the truth. Man Scott you made my day in more ways than one.
Rafie...brainstorm away...my website www.richardferri.com has my contact info or feel free to storm up this blog. Looking forward to it. Now taking YOUR advice of "staying out of my head if I want to survive..." I am running to an AA meeting. Nothing more toxic then a self centered recovering drunk, addict, and whore (who happens to have a place to talk, write, vent, and practice AIDS medicine. Hanging on both sides of the pill bottle continues to be a saving grace everyday.)
richard,
no where in my statements did i ever say i blame myself.....i most certainly don't. I don't blame a single sole. I am happy to just be alive! But also understand HIV attacks each and every one of us differently. Your immune may be stronger than mine and etc....so meds may be more necessary for me than you so to say. Do i see an need for you to tell me to go fuck myself...none what so ever. It just shows aggression for no apparent reason. I was simply stating that there is a large number of people who sometimes get themselves into a situation that ends up not so hot. Like i said , i don't blame myself, i made a mistake and bam, i'm living with it....who cares.
Richard Ferri, I understand what you are going through, I myself don't have HIV but my grandmother was infected with HCV (Hepatitis C-Genotype 1 the hardest strain to treat) through surgery and all the doctors say oh your liver is not failed yet or something to that nature. I am a Nursing student and I am tired from what I am seeing and to that individual who said don't play the blame game, 1st off no one deserves HIV or any disease, life can be hard enough you don't need something that will cause prolong suffering I have held AIDS patients in my arms, I sat with people suffering from cancer, HIV you name for hours in an emergency room just for someone to tell them to wait another 4 to 5 hours. Everything is not about money. By the way my cousin died from AIDS about five years ago, AIDS related lung cancer, that is horrible . Speak your mine brother, you are telling the truth and people can't handle it, them f*** them!!! May GOD bless you!
LS...There is nothing I can say to you except I am sorry. How I responded to your comment was wrong, unprofessional, and just plain mean. I honestly do not know what came over me, but that is so beside the point. I was 100% wrong to use the tone and words I did with you and I am humbly asking for your forgiveness. Thank you. Ric
As a 21 year survivor, I'd like to thank you for writing exactly what I feel. It doesn't matter that my CD4 cells are whatever number. Some days what matters is that I have diarrhea or am nauseated. My viral load (or lack of one) doesn't tell you about the tremendous tiredness I feel, and how when it hits I just lose all my energy and have to nap.
I just recently finished a 4 and a half year fight to reclaim my disability checks after having gone on their work trial program. As soon as my symptoms reappeared, they didn't want to reinstate me. Eventually my partner's patience ran out. He lost hope and turned to drugs to numb his disappointment. I lost him last July.
Because I'm stocky and broad shouldered people assume I'm healthy, even people who know my condition. Only people like you, Richard, can understand what we've gone through. Thank you for your post. I couldn't of said it better myself.
Kevin, my heart is breaking for the loss of your partner. The pain he must have been in and witnessed had to horrific. Our daily battles and struggles are seemingly lonely but that is really never the case. Those around us - close and on the periphery - suffer also. The cruel osmosis of this virus permeates all boundaries.
it turns a corner in life, when you are forced to go to bed at night, wondering if you will wake up, and when you do, is this the last day. will anyone know you are gone, will their disgust and fear reduce everything you love and care for to dumpster trash???? for over 20 yrs. numbers have changed, and life is doctors and hosps. but they were there before AIDS, so will the numbers add up in time to take the daily fears away??? I cannot remember what it felt like to not be thinking this is the last time, or how it felt to have energy or to feel good, or that people would like me if they knew..........and if they know they think I did all the "things" that give you the dreaded dicease. but I got a blood transfusion. oh, well!
Gloria and the world at large. Everyone who has AIDS got infected EXACTLY the same way. We came into unprotected contact with the virus. There are no good guys or bad guys here. All there is a damn virus eating at our bodies and souls. No one is special to the virus; it is an equal opportunity life sucking parasite.
I do relate to you and your anger with this damned disease although I have been poz for only 8 years . I am sick of people pitying me , relatives who look at me with smug, sad faces . I just want to scream sometimes that I am human this has happened to me it has nothing to do with you . I went through the hep c treatment and hid from everyone until it was over . I lost 60 lbs on a 5'6 frame my eyes were sunken . First thing my gay best friend said was oh you look great ..I just wanted for one second him to climb into my shoes . You know the type actually you probably slept with him everyone else did . Big beautiful blue eyes and a big dick. I gave him some condoms to use ( I counted them) I went to visit him in the summer they were all there all of them . I am a top I won't get it . I pull out before I come ...my god I think Your best friend is poz and you still think the same way you did in the 80's.
I watched and cared for all my friends who passed one by one until I was the only one left and I would probably still be negitive if it wasn't for my stupidity of trusting someone who raped and gave me this . I had such bad self esteem that is the only thing that saved me for so long . I was to ugly for the gay world I wasn't perfect with a perfect body so I was safe . Until this guy puts me out ,and rapes me . He is still around somewhere rotting in his Karma .
I have no idea why I wrote all this to you , but I did mentioned you in my blog and even put in a link . You say what I want to but I don't keep up the work you do hopefully some twink will get it and take care of themselves and the ones they choose to sleep with .
We all have some sound to give to the voice of this epidemic...thank you for sharing yours. I truly understand how hard that can be at times; actually most times. Ric
Thank You
So Richard,
Thank you for posting this! Synchronicity in a way. I have been struggling with the questions you are talking about...what do these numbers mean? I am in alternative healthcare and have resisted the meds for nearly 7 years. About 4 months ago I decided to start meds due to declining tcells near AIDS level, but with undetectable viral loads and the swine flu panic. I am 'allergic' to the flu vaccines so they are not options. My doctor seems to think it a great success that my viral load from the past two lab results has been undetectable, but can't explain to me why my tcells have DECLINED since initiating haart and seems to want to overlook that fact. So what does it mean? Was I better off before the meds? What are they actually doing for me if I was undetectable before using them and am still undetectable now that I'm on them? I had more Tcells before I started taking them. So do I stop the meds? Do I go back to not have nightmares or syncope while lying down at night watching tv that my doc also seems not interested in getting to the route of? Why is it all about numbers and lets ignore the quality of life?
Here is a suggestion...find another "doctor"; I would stongly urge an AIDS certified nurse practitioner (that is what I am) to help you through this time. The "no interest" from your medical provider is NOT an option or open for discussion. If they are not "interested" then get your ass out the door. Would you tolerate the same answer from a mechanic about your car? Not likely but medical providers seem to get a free pass much too often. This is your life; live it bravely.
Richard, I am sorry you have to go through difficult time with meds and numbers. I can not imagine what it's like! I need help from someone who goes trough similar situation my ex is going through. My ex-husband was diognosed with HIV a year and a half ago. No symptoms, low viral load, T-cell count in the normal range, however he was put on permanent broad-spectrum antibiotic prophylaxis to prevent OI. Aren't OI of fungal and bacterial nature and sometimes have nothing to do with immunodeficiency? I know that the massive amounts of antibiotics can eradicate normal flora and actually lead to OI. And also his doc suggested to start HAART's which are, quite frenkly, very expensive, so he did. My question is why to put my ex on large amounts of powerful antibiotics and HAART if his numbers are fine and he's asymptomatic? Now he's got persistant diarrhea, vomiting, lost tons of weight :(
Whatthe? message surprised me and confused me even more. His viral load does not correlate to his T-cell count. No correlation! How could that be? Isn't viral load suppose to go down while T-cell increases? And his doctor couldn't explain that anomality to him? After 25 years of research, billions of dollars spend and doctors still can't give a clear answer on viral load and T-cell count? I am angry and pissed and very saddened that people are giving death sentense, put on 20+ plus meds a day, horendous side effects, no quality life and still no cure!!!
Irishka, that's terrible. Get him another doctor ASAP. This sounds like no treatment I'm familiar with, and I'm a 22 yr survivor. I've seen lots and this doesn't sound right.
Irishka, I hear and totally understand your concerns, fear, and justified frustration. I am as confused as you seem to be. If your exs' CD4 count is above 200 there isn't any reason for him to be on OI preventative therapy. I strongly suggest you find out his exact CD4 count, HIV viral load, and his anti-HIV medications. If his Harts working well for at least several (six usually) months then the OI stuff does not make sense, but I am trying not to play "armchair doctor" here. I am here to educate. I also suggest you go and read up on OIs at www.AIDSmeds.com (the best HIV information site around!)
While I know it does not any sort of common sense for the VL and T cell counts to be disconnected but in fact it is very normal for that to happen. Try to think of the VL as the ACTIVE and HARMFUL HIV in a body. Simply put the higher the VL results in a higher number or viral particles. The HIV particles (or virons) the more CD4 cells are destroyed. The VL acts "rapidly" and destroys T cells. Remember once a T cell is destroyed it is gone. It does not "come back". So while a person's VL goes down rather quickly with an effective regimen the CD4 count can take time to "build up" since the high VL has already done it's damage. What is going on now is that body is NO LONGER being rapidly assaulted by the high VL and many of the new T cells being mad do not get infected with HIV or handle the virus better. So it simply takes time. The body is recuperating from the onslaught of a HIGH VL.
However, lets put the science aside for second. Side effects can and should be treated. If they are not being taken of to your exs' satisfaction then he needs to speak up. Or have someone speak up with and for him. Also, without knowing where you live (feel free to email that info at rick@richardferri.com) you should be able to get substantial assistance for HIV therapy. I would also suggest that you consider getting your ex connected with a local AIDS Service Organization (ASO) so they can do all the "leg work" for him and get him the benefits he needs.
AIDS is NOT a death sentence in resource rich countries.... getting a new provider may be your best options as Kevin suggested. PLEASE LET ME KNOW WHAT IS GOING ON AND HOW I CAN HELP!!!