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LTS of AIDS, wanting to stay off meds and just live out the rest of my life.

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hrmrhiannon01:
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

Theyer:
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

badmachine:
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.

deibster:
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

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