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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: guitargal on November 21, 2018, 05:19:26 pm

Title: Are we + or do we have AIDS?
Post by: guitargal on November 21, 2018, 05:19:26 pm
I started thinking abut all the doctors I have seen in hopes to get more answers and treatment to the whole pain exhaustion wasting thing that lead me to isolation, depression, poverty, mal nutrition,  loss of money, employment and housing.

Not a one said I have AIDS.

I told the new to me nurse practitioner, that no one has diagnosed me with anything but fibromyalgia 7 years ago (pain clinic) and the ID Doc back then said he didn't believe in fibro.  After trying all the Lyrica, and antidepressants that did not help my symptoms I am back to square one.

Is it the meds I am on?

 I need some answers and relief from the pain as I can't go on like this.  And that as far as i know the pain / fatigue, the inflammation, the wasting is because I have AIDS.

Silence..then the whole, your blood work looks good.....yada yada..refer to ....

I guess I was cured when my T cells went from 13 to over 200 in 1997.

That was a month ago.

Appointment with actual doctor yesterday. 2 hrs there, sitting in pain, waiting because they are behind..   no breakfast. Barely made it back to my son's apt. where I am temporarily staying. 

They did the thing where you wait in the waiting room for 30 minutes past your appointment and then the nurse takes you in to do your weight and BP, and takes you back to the waiting room telling you that they will call you soon. Another 30 minutes. They take you in the exam room and you wait another 15 minutes. Spoke with arrogant doctor. He was at the computer the whole time.

(I swore to myself the day before I would not get upset and ask kindly to stop typing and look at me. I forgot all that and was a crying mess.)

He never examined me. Didn't listen to my heart or lungs with stethoscope. Didn't check my eyes or mouth or pulse. Didn't ask about BM, bladder, etc...
 Come to think of it, only one person has in the last 18 months.

Then back to the waiting room to wait for them to call me for my 2nd HEP B shot.

They wanted me to make an appointment in 3 months. Obviously in crisis and crying...no one cared really. one nurse did say kindly to take care.

 I told the receptionist  there is no point. There is nothing you can do for me. She said she was sorry about that.

I left with my thoughts confirmed, that No one cares.

Today I searched for support groups, ACT UP, anything to make a connection to vent my frustration and get help/ To find one person that understands...

Now I am all upset again and need to just stop thinking of this all and try to find something to do today to take my mind off all the people that have slipped through the cracks because we have a government that spends billions of dollars on things not needed and hardly any on making lives for people better.

Do ASO's do anything for anyone here on this board? The last one I was evolved with did nothing for me.

The new clinic here didn't even give me contact info for one. Do I call them,  how could they let people in crisis just leave with no other avenues to get help and compassion?

This is an AHF clinic that si supposed to be comprehensive. 

Do we need to ACT UP or just drop out and fade away? I am fed up. With the entire health and housing situation for all people suffering from illness and poverty.

Good thing I am planning to go to Mexico and visit my brother for a few months where I can live on my meager disability payment....I won't have health care and can't get travel medical insurance because of pre existing conditions so...I finagled a way to get 3 months of meds and...

so it goes.

thanks for listening to me vent.




Title: Re: Are we + or do we have AIDS?
Post by: Grendal on November 21, 2018, 09:25:35 pm
Saw your post further down, I was on Triumeq for maybe 18 months, my CK levels were high, I hurt all the time. Prior to 5hat years of sustiva, or similar components before it was one pill. Now on Genvoya, took a while to fully tolerate but life is better. Hope it gets better for you.

I donít know how to write a pm

Grendal
Title: Re: Are we + or do we have AIDS?
Post by: guitargal on November 22, 2018, 01:21:55 am
thank you. I will look into genvoya

i will get yet another opinion in a few months about a med change.
I will type out to the best of my memory every thing I have taken.

I seriously feel really bad stress now at the thought of going to a doctor. I don't sleep the night before. Used to be worse. I feel they beat me up emotionally. it is terrible.

constantly being subjected to the system that does not work. I get txts and email reminders i do not want.

I need to tune out . Battle fatigue.

xo
D
Title: Re: Are we + or do we have AIDS?
Post by: em on November 27, 2018, 09:52:41 am


My understanding of it is if you had a less than 200 and it went higher through medication the excepted beleif is you still have AIDS even if the numbers went higher then 200

personally I do not know if it is getting older or the virus. could be a combination of both  I beleive the damage to the body other functions was done and may never heal completely.

 I know this is not very helpfull just an observation that getting older with HIV is like aging intensified and magnified by the virus. the wear and tear by the virus. Not to mention the damage on mental health do to the influences caused by social forces  on the individual life of the person with the virus.

personally I feel lucky and blessed just to able to take another breath and to have lived as long as I have.

My view on it is to just hold on tight and enjoy the ride of what is left of my time living while taking the meds and thinking how great this little thing is. Just Being alive is something very precious and to saver with every breath.

sorry if I can not find something to say to directly help. the ability to open my eyes to see the world moving forward. I am sure some simple moments are worth putting up with the other stuff living comes with.

the aches and pains can get overwhelming the short sporadic moments of pleasure the every once  in while poke through make it well worth taking another breath .

 
enjoy the moments that you can is my hopeful attitude about the misfortune we find our selves burden with


AIDS is not for the weak be strong and bravely continue on. That may not be much but it is all we have and should be all we need to keep up and keep going

Be strong and be happy if not for you do it to upset all those naysayers and doubters watching you just to prove them wrong and see how angry they will get ?

EM
Title: Re: Are we + or do we have AIDS?
Post by: leatherman on November 27, 2018, 11:50:10 am
Quote
enjoy the moments that you can is my hopeful attitude about the misfortune we find our selves burden with
one of the craziest lessons I have ever learned in life is that everyone was always going to be burdened with something.... that's just life itself.  ;D


...
My view on it is to just hold on tight and enjoy the ride of what is left of my time living while taking the meds and thinking how great this little thing is. Just Being alive is something very precious and to saver with every breath.
....
EM
Em, I think that whole piece was the most beautiful thing you've ever written  :-*
Title: Re: Are we + or do we have AIDS?
Post by: LiveWithIt on March 18, 2019, 10:33:24 am
I saw my answer here in this thread which is if I was diagnosed with AIDS for being under 200 Tcells in the past are you still considered to have AIDS if you are now undetectable. I always say I'm HIV positive, but the AIDS diagnosis may help in terms of getting and keeping certain benefits.

Also as far as Triumeq,  I didn't really notice more of a depression but now see that it is.  I'm depressed anyway, I have no friends and I'm broke and in debt, at least  I have  a home.  I was kicked off of pain meds for my herniated disk with spinal stenosis because of the war on opioids even though I just took the lowest dose of Vicodin and have never asked for more or a stronger dosage.  Where I went the doctors all quit because there was some billing scandal going on and the new doctor told me my only option is to get back surgery which I do not want and can't get right now.  Anyway I'm not that bad when i can rest on my back which is most of the day.
Title: Re: Are we + or do we have AIDS?
Post by: weasel on April 12, 2019, 06:23:37 pm


  Have fun in Mexico guitargal   , I can relate , I live in constant pain .

  I did not know why my left leg hurt until a week ago , After Bob died I had to drive my truck , It is too hard for me to push the clutch pedal !


 My doctor does nothing , I have an appt.  In July with a new doctor , My old one had me on 8 different pain meds , I felt great !   Now I am on nothing and feel like I am dying  :'(


     The Doctors only look at numbers , my t-cells dropped a LOT this winter , no comment ?    It's normal ..... 

     I pray you will feel better , it's all I got .

                                                                         Carl

  P.s.  No one cares !   They just collect a pay check . 
Title: Re: Are we + or do we have AIDS?
Post by: guitargal on November 01, 2019, 07:42:10 pm
Checking in and re reading all your good replies. Thanks EM, yes it is great to be alive and do what good we can and be happy when we can while we are here.
Yes prove to them we are strong and can over come all the bureaucracy and stigma.
The people with chronic pain are suffering because of the CDC, the dr's and fear of prescribing because of the opiod epidemic. How many times I begged for relief or at least another treatment that worked. Was able to get pain management then they took it away, finally have had a good pain management dr and having the pain relief helps to do basic things like eat! there are a few FB groups fighting for chronic pain people, Vets and Civilians fight back and Don't punnish pain rally.
I did go to Mexico for 6 weeks. I had a great experience despite my brother hardly talking with me or doing things and being an arrogant narcissist. The time I spent with my "tribe" in Baja was the best! Should have stayed there the whole time and not go see my brother, dreaming of going back to Baja one day, just need $$$. All in all it was good and took me out of the Dr's and tests and social services mindset and remembered they do not rule my life and if they can't help me well F em. Going back to the palm springs clinic on friday. They are pretty good.
Title: Re: Are we + or do we have AIDS?
Post by: harleymc on November 13, 2019, 02:16:56 am
After 8 years on treatments I've finally cracked the 200 mark with my cd4s.
Title: Re: Are we + or do we have AIDS?
Post by: Mindless on November 13, 2019, 08:15:24 am
After 8 years on treatments I've finally cracked the 200 mark with my cd4s.

You mean just recently? In that case congratulations!! Happy for you  ;)
Title: Re: Are we + or do we have AIDS?
Post by: leatherman on November 13, 2019, 03:09:09 pm
After 8 years on treatments I've finally cracked the 200 mark with my cd4s.
congrats! That's quite a milestone!  :D :D

It took me 10 yrs to break 200 and I've been happier . .  and healthier . . . ever since. Hopefully days will be a little brighter for you now too that you're not so aidsy  ;)
:)  :D  :-*
Title: Re: Are we + or do we have AIDS?
Post by: harleymc on November 15, 2019, 05:22:03 am
Lol leatherman. I'm going to miss being aidsy when I want a slack day on the sofa bingeing on cable.