Author Topic: Guys, I need your support. (Read 7617 times)

Ihavehope · « **on:** January 10, 2007, 09:33:19 am »

It has been such a difficult new year. According to my Doctor my numbers keep dropping to low CD4 200's and so is my %. I am at a point that I feel like I could get an OI any time now. Bactrim supposely helps prevent them. My doctor is waiting for the Geno Test to come back. I been waiting since Thursday to get my results back and it has been the longest days of my life. I am actually looking forward to meds, even though I KNOW they are not pleasant and I would have to take them for the rest of my life but when I see such bad numbers I panic and don't want to get sick, especially since I haven't told my fam.

I Know many of you guys have been reading my threads and I may at times repeat myself but this is the only place where I can let out my true feelings. My doctor told me not to worry but until I see my numbers improve drastically I will not be able to sleep or be calm. It is affecting my work and social life tremendously. My family seems to notice that I am different. I feel like a zombie who is waiting for some miracle. I have so many thoughts in my head and wonder if my life will be at least half as good as it once was. Why don't I believe the doctors when they tell me I am going to be fine and that I will live many years and be healthy.

wellington · « **Reply #1 on:** January 10, 2007, 09:45:45 am »

Meds make a difference. Almost a year ago, now, I was in hospital and in very poor shape physically. Though I have rebounded significantly, my numbers have been slow to rise, but they are trending upward. I keep putting one foot in front of the other and sometimes it is difficult. If I could offer any advice, it would be to try to focus on those things in life that make you happiest and continue to move forward. Having a positive outlook makes a world of difference, for without it, the days can be very long indeed.

If you don't believe your doctors, then believe in yourself.

Maestro · « **Reply #2 on:** January 10, 2007, 09:51:05 am »

Hope,

When I first started caring for my HIV + Uncle I knew nothing about HIV and was SURE he was going to be dead in a few weeks. He had kidney failure, pneumonia, sepsis, liver trouble, a trach to breathe, an infection at the trach site, and Im sure I am missing a few ailments. ALL AT THE SAME TIME! His CD4 is very low, his % is very low, and yet, he is in California living on his own now. And, I can add, the outlook might be so grim for him.

So I think it is common to worry with low #'s, but it can be overcome. Just take good care of yourself...Oh, which reminds me, the Uncle made this miraculous recovery while taking the WORST care of himself I have ever seen...He NEVER exercises, drinks 15-20 Diet Sodas a day, is addicted to pain killers, eats 2-3 frozen dinners a day (and thats it...high salt and all)...Add all that up, and medical science has kept him alive!

Basically, I would say, try to put things in perspective. As time passes you will look back and say, "Wow, I can't believe how well everything is going"

Hope this helps...
M

Bartro · « **Reply #3 on:** January 10, 2007, 09:57:26 am »

Hope,

Don't plan on having a bad time with the medications. Many people do not. I am a strong believer in "mind over matter". Try to get it into your head that the meds will work well and you will have few, if any, ill effects. Best wishes and please don't worry yourself sick.

racingmind · « **Reply #4 on:** January 10, 2007, 10:07:43 am »

Hope,

Try to relax, I know that is easier said than done. My numbers bounced back on their own without meds. I suspect that yours will too if you were recently infected. Look at my history below...you will see that my numbers dropped on the second lab. I was considering going on meds at that time, but the good folks here (especially Ann) suggested that I wait until more tests were done in order to see a trend. I'm glad I did. My doctor ordered tests every month after that for 3 months...now he has extended that to every other month.

Remember, your first line of defense is your body's natural ability to fight off infections. Meds are for when your body has done all it can and needs help. I would get at least 3 labs done (one a month) so you can see a trend. Meds are forever and you need to have more information about what's going on in your body before making that decision. And of course...follow your doctor's advice if you trust him or her.

Also remember, stress (which you seem to have a lot of at the moment) depresses your immune system. Contact a case worker and set up an appt with a therapist that you can talk to..it really helps with the mental side of dealing with HIV.

Hang in there, you're okay for now....if it were really serious, your Doc would have you on meds already.

Dxx

poet · « **Reply #5 on:** January 10, 2007, 11:20:59 am »

I understand your need to post and talk and repost and talk, etc. It does help to let it out as much as you can and far better than sitting somewhere with all of this bottled up inside. The simple problem for you is that it is a waiting game, waiting until the genotype gets back because without that your doctor can't prescribe meds. and until the meds. are working, you aren't having them work on the virus. How to spend the time waiting: distract yourself. Do things that you don't normally do, whatever they may be, including traveling short distances, joining a health club, going to the theatre, looking at homes for sale. Seriously, distractions are going to help sidetrack the constant drumroll of waiting. Best, Win

Ihavehope · « **Reply #6 on:** January 10, 2007, 11:24:13 am »

Hi Poet

Yea perhaps you are right I should distract myself and that is what I have been doing up until Jan 4th when I got my first lab results. I have been doing pretty good until that dark day. Now is just fear with anxiety. a day seems like a week.

bocker3 · « **Reply #7 on:** January 10, 2007, 01:31:18 pm »

HI Hope,

Breathe -- whenever you feel panic setting in, take a few deep breathes. Unfortunately, waiting is part of dealing with your virus. Don't let it get the better of you -- worrying won't help anything, and may, in fact, hurt things. So, as said before -- I know it's easy to say and harder to do, but try to relax.
Please don't assume that meds are going to be awful, they are NOT for many people.

My biggest piece of advice for you right now -- find a therapist and/or a support group to talk through your fears with. This forum is a great place to use for this too, but some face time might also benefit you. If you don't know where to find a therapist or group -- call your local ASO and/or ask your doctor. You are very much like I was when I first found out, therapy was a godsend for me. I didn't find this place until about 10 months later.

Keep on using us to dump on and ask questions -- that's what we are all here for.

Mike

Ihavehope · « **Reply #8 on:** January 10, 2007, 02:46:05 pm »

It just hit me that I have the possibility of dying soon if the meds do not improve my CD4count and % 210/16%.

david25luvit · « **Reply #9 on:** January 10, 2007, 03:57:02 pm »

Have Hope....Hope! Take a deep breath and try to stop obsessing over it. Stress just makes matters worse
not better. Have a little faith in yourself and the med's and we'll see what happens. Thoughts of dying (and
we all have them from time to time) should remind you to cherish the life you have ...

you have my support good buddy........

{{{ Big Hug }}}}

Boo Radley · « **Reply #10 on:** January 10, 2007, 03:58:55 pm »

Ihavehope,

The possibility of doing poorly on meds, much less dying, is smaller than it ever has been, the odds being mostly in your favor. Meds are less toxic (short-term, at any rate) and there are more options in 2007 than there were even 10 years ago. HIV is no longer an automatic death sentence.

I know you're taking Bactrim but before you started did you have oral thrush or night sweats or lymph node swelling or any other potential indicator of immune system weakness? A CD4 count below 200 doesn't guarantee one will get any OIs but it is more common for people with CD4s <200 to get them. My point, finally, is besides the numbers you need to pay attention to what's happening with your body -- if you are otherwise healthy try to remember that fact. I'm not downplaying the serious issue of a CD4 count under 200 but am saying if your health is still good with those numbers you have less reason to be stressed. If you have had indications of immune problems talk to your doctor about them as part of the process of deciding to start HAART.

And believe me, you want to reduce stress as much as possible -- emotional, physical, intellectual, whatever. Chronic stress by itself can cause illness. You need to help your body by getting enough sleep, eating as nutritiously as possible, curtailing use of alcohol, tobacco, drugs, etc. (except I smoke pot... a lot), getting regular exercise, and other methods of promoting general and immune health. Doing all of these is no guarantee you won't have problems, and goodness knows plenty of us have issues with booze, drugs, tobacco, indolence, obesity (well, I do with the last 2) so if you do smoke, for example, it may make little or no difference in the course of your infection or it might. Same reason one lifelong smoker gets lung cancer and someone almost identical doesn't. It's a roll of the environment and heredity dice.

Thinking of dying soon is very common when you first learn about your status. I used to be jolted out of a semiconscious state while falling asleep with those "falling off a cliff" dreams except it was only the knowledge of being poz (and so close to death, I feared) that struck me. I've known my HIV status for 16 years. Over these following days, weeks, months, and years your life returns to a "normal" state as as poz person. I'm not one who ascribes positive (no pun) self-attributes acquired after testing poz (I was perfect before [a perfect mess]) but I honestly say my life is much better than I thought it would be 16 years ago.

I know it's easy for me to sermonize and babble since I've been so lucky (knock on wood) this far along but I think many other people will tell you the same things. People who are having a hard time with HAART, HIV, AIDS, etc. definitely exist right here at AIDSmeds and I mean no disrespect to them. You benefit from everyone here willing to offer her/his perspective and advice.

Good luck with the next set of labs!

Boo

Miss Philicia · « **Reply #11 on:** January 10, 2007, 04:20:44 pm »

Have you looked into a therapist or group counseling. I see you live in Astoria and it's REALLY not but a few subway stops into Manhattan. In fact, there are organizations geared to latinos there. Have you gone to GMHC in Chelsea. I still stand by my suggestion of Friends in Deed on B'way in SoHo. They even have free lunches some days. I know GMHC does. You need socialization at this point. Callen Lorde also offers psych care at low or no cost. You do not need to suffer alone nor should you feel the need to only find an outlet on your computer (no offense to AIDSmeds.) Do you have any close gay friends to discuss this with in person?

skeebo1969 · « **Reply #12 on:** January 10, 2007, 04:21:17 pm »

  Ihavehope,

   Outside of the fear and anxiety how do you feel right now? Health wise that is..

  Thomas

  PS.. I try to look at it like this.. As long as I feel ok, I am not going to worry about it. Helps me enjoy the good days so I don't feel cheated if I ever face multiple bad ones.

Miss Philicia · « **Reply #13 on:** January 10, 2007, 04:23:09 pm »

Oh, and get your doctor to give you some klonopin. Works wonders for anxiety.

Eldon · « **Reply #14 on:** January 10, 2007, 06:39:31 pm »

Hey Hope,

You see, when it comes to your inner anxiety, it tends to rearrange your mental picture of what is going on. When this starts to occur about the "unknowns" get a hold of yourself and try to distract your mind to think about something else as all you can do is wait for the results.

Either way the result will be the result and going into a panic is not going to change what the result may be. I do understand that you have a concern and that is ok. Just try to stay calm and take it one day at a time. The answer is not inside of a pill, it is inside of you.

"What can I notice right now that makes me smile?"

Ihavehope · « **Reply #15 on:** January 10, 2007, 06:43:40 pm »

I feel ok but I am just a scary cat and worrier by nature. CD4 counts are always an indicator of how my immune system is fighting the virus. In a little over a year a half that i got infected it went down so fast. Didn't they say it takes 5-10 years before you reach 200?

Eldon · « **Reply #16 on:** January 10, 2007, 06:46:46 pm »

Hey Hope,

With my personal experience, it did not take 5 - 10 years. It was within months.

"What can I notice right now that makes me smile?"

ndrew · « **Reply #17 on:** January 10, 2007, 07:09:48 pm »

Hope,

You are going to be OK.

The mental turmoil is the most difficult thing and it makes care for the self difficult (diet, exercise, sleep and love for you!)

The meds are scary, others here told me not to be afraid, but I couldn't help it.

But getting my labs back after three months of taking Atripla really put me in a good mood!! That stuff works!!!!

Luv and support,
Drew

Ihavehope · « **Reply #18 on:** January 10, 2007, 07:12:10 pm »

Hey ndrew

that is the reason why i am waiting for the geno test. Hopefully i will have many drug options. Before my lab results I was not thinking or considering meds right away but now I think I need them.

Ihavehope · « **Reply #19 on:** January 11, 2007, 12:27:55 pm »

Feeling crappy and feel tired as well. I am so frustrated with the delay of the geno test. I may have to reveal to my family tonight that I am poz because I fear that I may end up in the hospital soon for physical and anxiety problems. I think I would rather tell my older sister now than her having to take me to the hospital and telling her there. It may cause me more stress and get me to get more sick to tell her but from a few forum post I have read there are no guarentees CD4 cells can increase a whole lot from me preventing from getting and OI. Bactrim seems to be working OK but the effect doesn't last long. Please pray for me guys.

Miss Philicia · « **Reply #20 on:** January 11, 2007, 02:12:58 pm »

Have you considered telling your sister and having her tell your family. I know... kind of a cop out but I told my entire family over the telephone (TEN YEARS AFTER THE FACT). By that time the anxiety factor had driven me close to checking in a mental ward (OK... not that bad but I digress... it was what I was afraid would happen). Anyway, after it was all said and done, and some tears shed (mostly by me, not my mother) they've been THE MOST FABULOUSLY SUPPORTIVE PARENTS IN THE WORLD. And what's more, I'm closer to my parents than I've ever been in my entire life.

Just food for thought... you do NOT need the extra anxiety of hiding things right now. I know everyone discloses at different times but I can't help but add my own experience in on this.

Heart goes out to you -- have you gone to any support groups? There are tons in NYC.

Ihavehope · « **Reply #21 on:** January 11, 2007, 02:18:24 pm »

Hi Philly

Thanks for your sharing to me your experience. It is alot harder for me to hide it because I still live at home and my parents are Spanish Immigrants with not much education. Due to that they will need me to be calm and inform them. I was hoping to do it at a time where I was better, mentally, than now where I fear I will get sick. Things have not worked in my favor sinced diagnosed. I had hope things would be the least difficult as possible but it has been the most difficult.

BubbaPat · « **Reply #22 on:** January 11, 2007, 06:12:47 pm »

Hey Hope,

First off, just like everyone else said, breath deep and relax. Next think of a nice big hug from someone that really cares. You know the hug, the one that you love feeling wrapped around but you wonder how long it is before you ribs or backbone cracks under the pressure? That's the hug I'm thinking about right now!! Let's see if we can fracture a rib!!!

I never got to tell my parents I was positive or gay for that matter. My dad passed shortly after my family found out I was gay and then when I became positive, I just never told my family. Don't let me be your example in that though... my family is nuts. I've the youngest of four and seem like I'm the only adult sometimes.

Familys suprise us though. They're stronger than we give them credit for. Talk with your family and stop stressing out. I tried stressing.... the gray that I got wasn't all that flattering.

Take some time each day just to sit and calm yourself. Enjoy a bath once in a while. We humans are pretty tough once we realize it.

Hang in there kiddo.

BIG BIG Bubba hugs!!!
Bubba Pat

Miss Philicia · « **Reply #23 on:** January 11, 2007, 06:45:24 pm »

Parents can be very supportive. I *REALLY* wished I'd not waited a decade to tell them... in fact my mother was quite hurt that I didn't trust her enough to tell her and that I suffered alone for 10 years. But she made it up to me by taking me to Scandinavia, Russia, Iceland, Greece and Turkey.

HEE HEE

I think we're taking the Queen Mary 2 to Ireland this year.

Ihavehope · « **Reply #24 on:** January 12, 2007, 10:53:28 am »

I spoke to my Doctor and she told me i have to wait for the geno test to come back today plus another 2 weeks to talk to adherent and nurse about the med. WHAT? I am in the borderline here and she wants me to wait 2 extra weeks. Do we all have to wait that long to take meds

Miss Philicia · « **Reply #25 on:** January 12, 2007, 02:16:00 pm »

Yes, the need the geno test to make sure they put you on the correct meds. Do you really want meds that will end up being ineffective. You REALLY need to relax. You're not going to keel over in 2 weeks time I don't think. It's not like you have 3 t-cells.

red_Dragon888 · « **Reply #26 on:** January 12, 2007, 05:47:48 pm »

If I were you I would start treating myself to movies, museums, parties, or what ever takes your mind off the medical side of the issue. Are you feeling 100%, or are you feeling 30%. This is what I asked myself every os often. What can I do to feel more positive about life. Would it be going to church, visiting places I never visited before or reading a good book. You must keep the mental side up for power when the mind sand soul feels good and excited to be alive. Then when you see your doctor, deal with it. Don't let the results be a death sentence. Let them tell you that you must act even more proactive in keeping good health and staying alive. Find things to make you happy. Do things that make you happy. You are still alive you know. Act like it.

Miss Philicia · « **Reply #27 on:** January 12, 2007, 10:59:04 pm »

I still suggest asking for some benzos to control your anxiety. I don't know why everyone's so afraid of these things.

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