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Author Topic: LTS of AIDS, wanting to stay off meds and just live out the rest of my life.  (Read 4610 times)

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Offline hrmrhiannon01

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  • Posts: 4
Hello, I am a LTS of HIV/AIDS for over 22 years, these med's have messed me up so bad that i am just tired,It has crippled me and I have no life. I have peripheral  which really hurts me 24/7 the pain etc I just cannot stand to live like this.
I do not understand why Any physician would just let me live my life out , and yes , taking pain melds and perhaps some antibiotics  and let me live. I am very tired and this is just stupid, living on ssdi and medicare I hardly use it, I done feel that I actually earned the right to use medicare or even my monthly check i feel so guilty and this is such a waist of life. i want to GO. does anyone understand what i am saying, am I alone ?? - Rain

Offline mitch777

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  • Posts: 3,377
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hey hr,

welcome.  :)

while i cannot address your current solutions that you need to have better days, i DO know they are possible!

i have been + for 30 years and have been dealing with daily pain from migraines for the past 18 months, among other glitches along the way.
there is always something to enjoy if you can focus on it.

please hang in and post again!!

you have given us so little information to help you.
this site is an incredible source of support.

mitch (aka Mark)
« Last Edit: November 03, 2012, 08:10:52 PM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Offline hrmrhiannon01

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  • Posts: 4
It seems all i have is medical problems and no one can figure out anything. I had a small stroke about 10 years ago and thats when it went down hill. I have fought doctors over pain meds, they put me on Methadone then when I moved my doctor refused to help me and I went into detox and I was going after her License, she told me that it did not matter if I took it away as her husband is a doctor. I know it would of really hurt her after all the years and dedication she does have for hiv patients. she was let go by some idiot.. I know it sounds odd we had a real strange relationship. anyways I found an new doctor and I am having trouble with my lungs, heart, Kidneys and OMG my Liver is killing me yet they say its okay . My issue is after al these years of putting on these HIV meds has really messed me up . its difficult to live daily. I am supposed to get a new doctor whom is a female, I have no Idea how she will be not to mention will she fill my pain meds , I know it seems like I focus to much on pain meds, but I am just in alot of pain. I have seen so many specialist for everything yet they send me back to my own doctor and always says there is nothing they can do for me.. go figure.. I am emotionally and physically exhausted, fighting over pain meds etc. and now that Kentucky has changed the laws for pain meds its making it difficult for doctors to write the scripts.. so much I can say about me and the things that has happened to me I just feel that as a HUMAN i should have the right to live out my life the way I want too , not aas a doctor wants me to to stay on the HIV meds or no pain meds is how I am being treated, I d not want to live like this, i would rather just get off the meds pump me up with antibiotics and pain meds and let me GO..I have been ready for almost 10 years now dealing with this for 22 years i know other LTS live okay. yet I am NOT them .. we are all different and should be treated as such. I hope this help out more of what info you wanted.. - Rain

Offline mitch777

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  • wish i were here
hey rain,

it is quite understandable why you feel the way you do.
i hope that you didn't think that i was trying to minimize your pain.

i recently needed to seek professional mental health care to deal with my pain.
it was not an easy step but it has been very helpful so far.

also, i have a great relationship with my primary doc as well as my hiv doc.
sounds like you have been bouncing around a bit with docs?
frustrating, but develope your relationship as best you can and if it is'nt working, find someone new.
easier said than done, i know...

hang tight and keep posting. :)


31 years hiv+ (oct. 2013) with a curtsy.

Offline wolfter

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  • Posts: 4,392
I, probably like many others have read your post and are probably thinking through our responses.  Just wanted to let you know I care, I just have to process it all in order to give you a proper response.

Many of us have been there, so just hang here for a while.  If nothing else, some of the threads here will make you smile for a while.   ;)

Welcome to the forums.  Hope it gives you as much as it did me. 

Wolfie
productivity breeds content

Offline wolfter

  • Member
  • Posts: 4,392
You have quite a few issues that needs addressed.  I'm not sure how to answer them other than suggest you follow up with this new doctor.  I learned the hard way the importance of having a doctor who is your advocate.  Perhaps she will discover the underlying causes.

It sounds as if you could also benefit from some mental health therapy. 

take care

Wolfie
productivity breeds content

Offline ARMANDO

  • Member
  • Posts: 249
i,ve been hiv+ for almost 25 yrs now and there was a point a few years ago that i felt the same way you do,i was tired of taking the meds , the side effects ,the long range damage to my body and to my organs,the physical damage to my body,I WAS JUST SO TIRED!!!I decided to get off all my meds for almost 7 months and then one day i thought i was having a stroke.I was diagnoised with BELLS PALSEY.MY VIRAL LOAD had gone up to 780,000.the problem was that i wanted to die not get sick!!!

Offline weasel

  • Member
  • Posts: 1,641

     Hello Rain ,

                        I have been POZ  since 1980  !

     I did go into AIDS   about 9 years ago ?   

     I have a good outlook , I think being above ground is way better than
    Being fertilizer  ::)

      At times I have so much pain I can not get around the house . I'v been limping
    lately .  I try to ignore the pain . 

    What is important is to try to get more HAPPY !!!
   Hard to do , But it makes such a big difference if you are happy , A little
  joy goes along  way to feeling better  .

     Please keep taking your MEDS  .  Death from AIDS is an ugly painful way to go ,
   Better to be healthy and work on living , We only get one trip and we must make the best of .

                                       My heart goes out to you ,

                                                                     Carl
" Live and let Live "

Offline harleymc

  • Member
  • Posts: 199
Hey there rain,

Keep on pestering those doctors to get your pain management happening. It'll take a whole lot of approaches, physio, maybe diet supplements, psychological counselling, exercise therapy.... The key might be something other than medications. But keep pestering those medicos.

I went through two years of excruciating pain from back injury and went off my HIV medications.  I'm not pain free yet but manageing it better- strangely enough because my liver is fucked up I'm not doing any pain medications at all. I do find I have to consciously concentrate on the good things that happen in my life, but i do understand how utterly exhausting and demoralising pain can be.

I'm back on my HIV meds now because the disease symptoms were making my life & pain worse.

Hang on in there.

Offline konkrypton

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  • Posts: 30
  • Everything works...in theory.
    • Nite Ramblings
Rain,

I hope you're still out there. I too have had a lot of pain, and some of it is because of the meds I take. The protease inhibitors caused the joints in my hips to deteriorate. I also stumbled and fell in a parking lot, and blew out a disk in my spine. So at this point I've had back surgery and both hip surgeries. I still have pain in my lower back. But I take pain medication for it. You have to search to find a good doctor, especially one that will understand your need for how much pain medication you take. And you have to be willing to negotiate with the doctor too. They are not going to give you so much pain medication that you're blotto for the entire month.

Sometimes the voice in the back of your head says you're in pain is lying to you. It's only telling you that so that you'll take more pain medication. It's a sign of growing pain medication addiction. You have to fight it. You have to examine whether you are really in pain. Don't just trust your first instinct.

If that's not your situation, I apologize. I say this out of love. I lost my partner to OxyContin addiction. Right now I'm taking oxycodone and that's the strongest medication I will let them give me.

As for feeling guilty about getting a government check, join the club. But I found that the best way to fight that feeling, is to do something for somebody else. Find someplace to volunteer, find a cat to look after, it doesn't matter. Just find something to take care of, it will help you feel useful. Pets are good because they need love and attention. Every moment you're taking care of them, you're not thinking about your own situation. And they give back. When you're sick and not feeling well and one of them crawls up to you lays down with you, you feel comforted.

These are just my thoughts, take them for what they are worth. I wish you luck, please write back.
« Last Edit: November 25, 2012, 12:21:48 AM by konkrypton »
KK
--
I distrust morning people. I suspect they setup the rules of life while the rest of us slept.

Offline hrmrhiannon01

  • Member
  • Posts: 4
LTR of HIV/AIDS .. this is part of a facebook my compainon put out.
« Reply #10 on: April 27, 2013, 02:52:21 PM »
On December 21st, 2012, I called Rhiannon on my way home from work to see if he wanted me to stop and pick up anything from the grocery.  Within ten minutes of that call and my arriving at home, I found Rhiannon, partially disoriented, curled up in a fetal position, blood streaming down his face and on the patio, with him asking me what had happened.  I got Rhiannon up and in the bathroom and began assessing the situation.  He had about an 8 inch wide laceration above his left eye brown, and lacerations to his nose, chin, and cheek.  Further observation revealed a possible broken nose as it had begun to swell and changing to a bluish color.  I immediately applied pressure to the wound and called 911. 

 

Upon arrival, EMS inquired as to how it occurred.  I explained that I had just spoken to him not more than ten minutes prior, and all was okay.  Sometime within ten minutes of my arriving home, he had blacked out and fell face forward into the concrete patio without a break in the fall.  He was taken to Norton Brownsboro Hospital where his previous PCP (Norton Infectious Disease) practiced. 

 

ER nurse "Shannon" evaluated him and began irrigating and cleaning the wound.  He was admitted that evening for observation while they determined the possible cause for the fall.  Being almost 2 am, and having to work the next day, I went home fed the dogs, and retired for the evening.  I went to work for a few hours the next morning (Sat, 22), and then onto the hospital around noon to check in on Rhiannon.  While there, not more than 20 or so minutes, Rhiannon's nurse (lets call her Cathy) came in to discuss what happened as Rhiannon was displaying some signs of memory loss.  I explained the above incident.  During this conversation, the television news (WDRB) was discussing the recent shooting in Connecticut school killing several children and adults by a person with mental health issues.  I stated to Cathy, as a mental health professional, I understand why people snap and expressed concern for the victims, and the alleged shooter.  Cathy immediately interjected and stated, "I cant have this conversation with you".  Looking at one another, perplexed, I asked Cathy why she appeared offended.  She reiterated, "I cant have this discussion with you and proceeded to walk toward the door."  I apologized for whatever it was that upset her, and began reading a freshly printed copy of the patient handbook that was on a shelf.  As Rhiannon and I talked about the nurse's strange behavior, I noticed two men looking into Rhiannon's room.  Around this time, his IV machine began beeping loudly.  I approached the nursesí station to ask assistance in resetting or quieting the machine.  As I turned, one of the males (they both looked about 22 years old, maybe younger) commented to the other, "you go on I got this".  I approached the door to Rhiannonís' room and inquired of the fell, "By any change are you here for us" as I looked down at the name "Security"  on his badge.  he proceeds to explain that Nurse Cathy had complained to security that a "family member" had threatened harm to staff and she needed assistance.  I walked into the room and explained what the man had  stated to me.  Rhiannon because extremely irritated, pulled out his IV, and proceeded to get dressed.  The Security guard reported he could not intervene as he was not an employee of the hospital but a paid contractor who had to investigate the complaint.  After hearing the story, he reported he didnít see a problem but had to follow the hospital request to have us escorted from the property.  Rhiannon had just been sutured up and was waiting to see a doctor for the concussion, and later diagnosed UTI (urinary tract infection). So we were "escorted" from the hospital grounds to our car. 

 

Over the next several days, Rhiannon begins to have displayed a sensitivity to lights, headaches, pain in neck and arm, not to mention his broken nose, and soreness from the fall. 

 Currently now as of 4/27/2013  My viral load is over 6 mill and t-cell is less than 100. I went to the WINGS Clinic as I could not fid any other help with this disease and was seen by DR. Huang until she left . Now I went I to see a new physician she refuses to write anything as she states she is an HIV specialist and says that my pain is not HIV related.. OH if you only saw my medical records this is so far from being true as she never even looked at my medical records from the date I saw her.  I am now forced on Hosparuce to find the help I need for pain. I am no longer taking HIV meds as I do not have them.. I am not allowed to see any physicians or I can be dropped by Hosparuce.. What is one to do when you cannot find the right medical help , the last thing I want to do is close the WINGS clinic down , so many depend on them. I could of closed them down when Dr Haung was the main physician. We talked about it and I felt really bad as this is not what I want to do. I will start using star power and any other help I can receive. Its obvious the WINGS clinic does not care about anyone. With this ne bill passed over Opiates She said I had to see a Pain specialist which I have been to.. Many of them and they send my back to my HIV physician a they state itís HIV related and they do not deal with HIV person and Pain.. I am stuck.. Pain specialist will not help and nor will any other physician.  Does anyone have any ideaís of what I can do. My last option is to bring the WINGS clinic down.. and trust me. I will succeed in doing this. I just do not want to hurt others in the long run and I will fight till my death to see them closed and will use all my power including Celebrity power.. And the local news media. 

Most sincerely,

Rhiannon

Offline Theyer

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  • Current ambition. Walk the Dog .
Welcome Rain to this forum I hope it can help you.

Been thinking about your posts for a couple off days and have made a couple off attempts to reply to you.

So this where my thinking has lead me too.

You , I think are in fight mode with the Hospital/clinic , you want them to address your pain with pain killers, they will not as they cannot find a medical route for the Pain and they can / will not perscribe only on your statements off pain.

This has created horrible situations and your anger has now got to the point where you are considering dying by stopping all HIV meds.

I hope you can use the energy that this fight with the hospital brings to you in looking at all ways to live with the pain you have and that the Hospital in seeing that you are engaging in all the possable techniques, will also reconsider there stand.

As it reads to me from  your posts the situation has reached stalemate and your thoughts will really harm you , and that is a terrable waste.

I hope that things are calmer at the moment

Michael

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline badmachine

  • member
  • Posts: 2
Your desire to leave is valid, and there are some doctors who would honor it, even if they are not legally allowed to say so. Look for doctors who handle hospice care or palliative care, and express your desire to go. They certainly can not state that they will help you commit suicide, but if your case is as bad as it seems, some would be willing to help you leave with dignity by prescribing increasing doses of strong opiate medications, especially morphine.

That said, I was unhappy, and quite possibly thinking the same thoughts that prompted you to make that post. Sometimes a change of scenery can help with a change in perspective. If there is nothing to hang on to where you are, try moving somewhere. Maybe somewhere you've always wanted to go, maybe throw a dart at a map and just go. This helped me get out of the "it's time to go" mindset I was stuck in way back in 2002.

You have my best wishes for good health and happiness.
diagnosed HIV+ August 19, 1991

Offline deibster

  • Member
  • Posts: 153
Rain,
I hope you have found some help & comfort. I have two friends who stopped taking their hiv medications in the past year. One worked 30 hours a week & was an active guy. All of us, his friends are baffled at the decision he made. He died quickly, but it was still a horrible death. Half of us are just finding out now, because we knew him through the ASO and we don't use last names there, so we didn't know which Michael had died.
The other friend is in hospice care with PML, a fatal brain infection. He can't take care of himself & soon he won't know who he is. All of the opportunistic infections are a horrible way to die. PLEASE rethink this decision.
Love & big bear hugs, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

 


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