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tested positive 11/20

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Eldon:
Yes, I AM Supporting You!

Hey Rob...

It is unfortunate that you have tested positive for HIV. The BEST thing right now, is for you to take care of you and to get it all worked out. I do look forward to hearing more from you as well.

In my own way, I wish to extend to you a WARM WELCOME here at the AM forums. Here you will find the encouragement, acceptance, communication, understanding, support, some cries, some laughter, and many of your questions relating to HIV/AIDS answered.

Truly, it is a diffcult health situation to accept. However, it is strongly recommended that you Deal rather than Dwell on what has occurred. This will help tremendously to cope with what has occurred with your health.

The Handshake Of Reassurance
We have a great group of Real People who will listen as well as answer you. We are here to Encourage, Learn, and HELP one another as we all walk on our journey in this life.

With the consideration of implementing a Positive Mental Attitude, it will also assist you on your journey in this life as well as having a Positive Impact on your immune system and your overall health.

In fact, through your Positive Mental Attitude, it will HELP you to push forward through ALL of the obstacles on your path that you are now walking on.

Talking and sharing our experiences with other people helps us see that we are not the only ones with problems. Feel free to come and vent with whatever is on your mind from time-to-time and to interact with the other members.

Often the act of writing and the ability to “SEE” your feelings leads to therapeutic insights and solutions..

In the interim, you may want to start taking a multi-vitamin, and some Omega 3, because it is all up to YOU where YOU want to be.

Exercise at least three times per week for a minimum of 30 minutes per day, as this will do you good to help keep that unnecessary stress away.

"Don't You Dare Give Up, Don't You Dare Give In... Because It Is ALL Within YOU To WIN!"

Robert:
wow rob...

my name is rob too (well, my brothers call me that.  My sisters-in-law call be robby.  My Mother called me Robin.  Dad called me Rob....  I prefer Robert...sounds like a poem, doesn't it.)

Anyway I think we were separated at birth.  I mean your story with Kaiser is IDENTIACAL TO MINE!!!.

I was living in the BAy Area (Fremont, across the bay and about 40 miles from SF.)  In early 2003 I was starting to feel tired and run down.  I checked with my Dr at Kaiser and just sort of got the run-around.  I saw her again that spring and again in June and the usual  <shurg> and take some vitamins.  In August I went rafting down the Rogue River in Oregon with my brothers and they started asking me what was wrong.  They could see it too.  I didn't have an answer for them.

Now it's Oct 2 and I saw my Dr again at Kaiser.  She sent me to radiology to get some x-rays.  I couldn't even walk up there.  I had to get a volunteer (a gray-haired grandmotherly type) to push me in a wheelchair.  By the time I got back down to my Dr's office, I guess the radiologist had already talked to her because the Dr immediatley threw me on a gurney, tied me down and wheeled me off the the emergency room.  That was the last I ever saw of my Dr.

While I was in the emergency room, a young, good-looking guy had my x-rays in his hands, looked at me and asked if I was gay or did drugs.  I asked him why, and his exact words, "Because you've AIDS, fella!".  I made 2 phone calls.  ONe to my MIchael, my partner, and one to my brother.  I left messages at both places.  That is the last thing I remember.  I woke up 11 days later in the Intensive Care unit, with tubes down my throat and IV's in my arms.  Michael, my twin and his wife and my best friend were standing around the bed looking down at me.  It was weird.  I couldn't talk because of the tube but I did some blinking.  It seems I had PCP, had had respiratory failure twice and my last rites read to me. 

Sometime later I met my new DR.  She is an ID doc (and she is still me my ID doc as well as my personal care physician.  The old Dr. is history).  During my recovery I also went thorough the same slew of Doctors and tests you had; the MRI's. the spinal taps, brain scans, body scans, pharmacists, opthomologists testing for every possible OI.  Then came the   nutritionists, physical therapists (I had to learn to walk again...jesus..that was spooky), counselors and RN's. I spent a total of 5 weeks in the hospital (admitted, released, re-admitted and released again with home nursing care.) 

At the time I had 18 t-cells (6%) and 500,000+ VL. 

My initail HAART therapy was Kaletra and Combivir and it made me psycho.  Literally, I was losing my mind.  I had dreams of crawling across my leaving room floor, then falling over the edge to the cliffs below.  Star troopers would hover over me, keeping everyone out of the room.  There was a big granite cube (ala the Borg from Star Trek) on my sofa and I so wished for it to go away but was afraid that when it did, that meant I was dead.  I freaked out at the TV remote because I didn't know how it worked.  The telephone also freaked me out.  I didn't know how to answer it.  LIke I said the first set of HAART was an abject failure.

My ID doc finally changed my drugs to my current regimine of Reyetaz, Norvir and Truvada.  I became undetectable in 3 months and right now, after 3 years, I'm sitting at 609 t-cells (35%).

Not surprisingly, I'm on disabilty after all that.  It's been 3 years. Michael and I have since moved out of the Bay Area and are living in Red Bluff, CA. about 4 hours N. of SF.  We live on our farm and I love it.  I stay busy with lots of work and exercise outside. 

And I love Kaiser.  Like I said, that 1st Dr is history.  My ID doc is now my PCP and we have a great rapport.  I see her every 3 months and now that Kaiser has upgraded and secured their email we talk fairly frequently.  1 year ago I was extremely tired and aenemic and sent her an email.  She saw me right away, and got me on some procrit.  Unlike that 1st Dr. my current Dr always listens to me and always does something about it.  Still have some anemia problems and we're trying to fix it.  So make sure you stay with your ID doc.  Don't let them send you back to the other one.   

So that's my story.  I just read yours for the 1st time.  I was reading in the new forum about Others Helping those who help those with HIV and I saw Scott's thread.  Then I read your response ("you MORON") and cracked up so I thought I would read your other posts and get to know you a little better.  That's when I realized we had a lot more in common than just HIV, depression, and a sense of humor.  We both went through the same system.

Welcome to AM.

robert

koi1:
Hey Robert,

This is Rob, your story gives me hope that I may someday soon start my meds and be on the road to recovery. Kaiser has a very good ID program for HIV and AIDS. It was the first time in my history with them (10 years) that I feel I am not being ignored. They also did a good job with my brother-in law who fought lymphoma this past year, although we had to advocate for him a lot more to move up his appointments. They have been great, always there when I drop by with a question. I call them often and they really seem to care. If they don"t they are really good bullshitters.

You went through so much, yet I would have been there too If I had not been tested. You are really a fighter, a champ...Did you get any weird skin symptoms like flaky skin on the face, red cheeks, and weird itchy rashes before you were diagnosed? I have an eye condition that has me seeing floaters. They never told me what it was, but I think it is related to HIV. I think that was my earliest symptom in 98. Funny enough this really cute doctor treated me in San Francisco when I had an episode while visiting Scott at Hastings.

Right now my biggest concern is that I am wasting away, just lost 3 more pounds. I had bad liver labs on tuesday so I have to wait till thursday to get new labs back. I need to start these meds, side effects or not.

So that is why you have a cow as your picture, you live in the country. I guess you are enjoying the peaceful life. I enjoyed your story Robert. And yes my family also called me all those names. They also call me Roberto. Maybe we sort of live in a parallel universe.

roberto

Robert:
Hi Rob...

Well, other than fatigue and general weakness, I'm not sure what my other symptoms were prior to my diagnosis.  My brothers didn't think I looked so hot so there must have been something, I just can't remember. Maybe I was red, and blotchy, I don't know. But I do know I was red and blotchy when I got out of the hospital. And I did have the floaters in the eye before  PCP and still do. Also I had tinnitus, the ringing in the ear. In fact that was one of my first symptoms.  You see, like you, I had my notions I was positive and chose to ignore it.  I last tested negative in 1999.  I got sick in 2003.  So sometime in those 4 years I got the big disease.  I also don't remember seroconversion. 

I did not experience the wasting prior to my hospitalization.  But that was another one of my AIDS symptoms.  While I was hospitalized and when I went home the 1st time I lost about 25% of my weight (from 145 to 110).  I've put it all back on now.  And now I have to watch my weight.  I exercise dutifully during the summer but for some reason I've stopped during the winter months.  Not good.  I went to see my Dr last Tuesday and they weighed me.  161 lbs.  I have NEVER weighed that much in my life.  It's depressing.  I'm a cookie monster. I love cookies.  Home-baked cookies.  I bake about 3 or 4 batches/week.  Michael doesn't touch 'em.  Just me.  So now I'm fat. First time in my life. Not good. In fact, it's down right depression.  Time to get back on my rowing machine.  I bring this up because as soon as you're off the motrim (?) for the PCP and your on meds and your numbers improve, then your weight will go back up.

My liver is OK.  That was one of the things the specialists looked at along with all the other stuff.  I can't remember if there were problems or not.  I do have high cholesterol/lipids (who doesn't) but I have a constant diet of oatmeal with flax every morning for breakfast.  Yesterday I felt like puking as I was eating it though.  Time to give it a rest, I think.

Depression was not a problem prior to diagnosis.  Now it is.  I've always wondered if it was the virus or the pills.  Just the other day our friend COWANDAL posted an article about the possible BIOLOGICAL LINK BETWEEN HIV and DEPRESSION.  I'm on prozac now and it does nothing for my sex life.   Stay away from that.  At my appointment the other day, my Dr took me off the prozac and now we're going to try something called EFFEXOR.  Know anything about it?  I think I should just give them all up and see how I do.  If I exercise and eat good, healthy foods and stay busy, I should be able to keep depression at bay.  What do you think?

So are you going to start meds soon?  I know you mentioned Sustiva and Atripla.  Ask your Dr what she thinks of my regimen...the Reyataz, Norvir and Truvada.

adios amigo....robert

ps. how's your memory?  mine sucks.
 

koi1:
Hey Robi,

Well, I guess denial is not just a river in Egypt but, sometimes we are thrown into the Delaware, and the water is fucking cold.

Do you do anything for the floaters? I only get treatment when my "eyeritis" flares up to prevent them. I think that once you get floaters they linger like unflushable floaters. You know what, I do get ringing but not that often.

Yep, I got AIDS the good old fashioned way, but what put me at risk is a string of complexities, including religion, and ignorance.

Glad you got your weight back, unless you are like 5 foot one, 165 is not that fat. I am 511 and 175 was a great weight when I was fit. Now I am 143.

You know, it is great that you like cookies, because I don't think there is any food right now that I like that much. So enjoy

I know what you mean about the oatmeal and the flax seed. I tried flax seed every morning due to the digestive problems (before diagnosis) and got sick of it to the point of gagging. I eat oatmeal every morning becaus my primary doctor swears it will help me with my diarrhea (not) , but have given myself an oatmeal holiday. It is horrible having to eat something you have grown to hate.

I do have a tendency to be depressed, but never to the point where I want to off myself. My ex has tried every anti-depressant available. He went nuts on several of them. My therapist suggested I try them and I told him no way, I prefer to be naturally macadamian. So in answer to your question I think that if you are not going to throw yourself under the harvester, then yeah try gettin' off of them. I think that my depression is part of my personality, and I tend to not want to snap out of it. I can't be Mr. Cheerful all of the time.

What is interesting is that when I am teaching those kids, I am very happy and a different person. I start putting on my happy face as soon as I get into the car to get to work. It is a real transformation. I thank my lucky stars that I have a job that helps me take my mind off the AIDS thing. The kids really cheer me up. There is no other time when the world seems so full of promise I think. That is why it breaks my heart when children are not allowed to have these years of innocence, because of abuse and neglect. I love having a meaningful job that feeds me emotionally.


Take Care Robert. I enjoy your entries.

rob








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