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Author Topic: As time goes by my "exit" looks uglier & uglier...  (Read 4982 times)

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Offline dave27yrspoz

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  • Posts: 3
As time goes by my "exit" looks uglier & uglier...
« on: July 11, 2012, 02:10:36 pm »
This may seem morbid or at best, unnecessary but, I can't help thinking about how the "end" is going to be since I have passed a few "almost time" moments already, "ya know?"  Here I am with my umpteenth set of drugs that seem to be working on this virus, years going by & aging now being a new issue, and I think of the damage the toxic drugs have done & are doing, let alone, the effects of the toxins on an aging body.  All I can imagine is one day everything failing, or should I say one item/organ failing at a time.  How miserable of an existence is that?  How can I be thankful for that?  I have this point of view because I have witnessed personally the long term effects of these "life saving drugs" HA!  Anyway..., I guess for me this is the luxury of being a LTS, "huh?"  Had a rough patch recently so I apologize for the "Negative Nellie" that I must sound like.
                                                                               Thanks for listening...?

Offline AlanBama

  • Member
  • Posts: 3,670
  • Alabama: the 'other' 3rd World Country!
Re: As time goes by my "exit" looks uglier & uglier...
« Reply #1 on: July 11, 2012, 03:28:32 pm »
I hear you Dave.

My life (and my partner's) is a series of endless medical appointments, social workers offices, and meds.   Everything is a challenge, nothing comes easily, and we have to work (and fight) for every bit of care we receive.   It can sure wear you down.

So yes, I totally hear you.

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jmarksto

  • Member
  • Posts: 667
Re: As time goes by my "exit" looks uglier & uglier...
« Reply #2 on: July 15, 2012, 12:30:20 pm »
Dave, Alan;

I am sorry to hear of your difficulties -- I am newly diagnosed (about 1 month in) and have not started meds.  As I have immersed myself in the learning process it has struck me that I am benefiting from all of those that have been before me - and I don't know how to really express this other than to say I have a strong sense of gratitude (which doesn't sound right either) to those that have dealt with this.

I am hoping for the best for you, and others in your situation.

Sincerely,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45% VL 25
02/25/14 CD4   792/37% VL UD
07/09/14 CD4 1004/39% VL UD
11/03/14 CD4   711/34% VL UD
03/13/15 CD4   833/36% VL UD
04/??/15 Truvada & Tivicay
06/01/15 CD4 1100/50% VL UD
10/16/15 CD4   826/43% VL UD
??/??/2017 Descov & Tivicay
2017 VL UD, CD4 stable around 850
2018 VL UD, CD4 stable around 850

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 34,126
Re: As time goes by my "exit" looks uglier & uglier...
« Reply #3 on: July 15, 2012, 12:45:53 pm »
Hi JMark,

I know your intentions are the best, but if you read the opening thread to this section, only those who qualify as Longterm Survivors are allowed to write here. You do not qualify as such.

Thanks for your cooperation.
Andy Velez

Offline harleymc

  • Member
  • Posts: 1,524
Re: As time goes by my "exit" looks uglier & uglier...
« Reply #4 on: July 19, 2012, 11:10:27 pm »
Hi again Dave,

Sorry to hear you're having a rough patch. It's pretty common for us LTS. We all go through it.

If you focus on the possible negatives then you're going to have a miserable time right now, in the present. A couple of things help me get through those thoughts maybe they can help you too... no guarantees but worth a try.

Try being 'in the moment'. Observe and note a dozen different things, all the sounds around you, is it hot or cold, body sensations, your breathing, the way that light falls on an object...  This takes practice and gets better the more often you practice. Try it a couple of times a day or more.

Keep an arm's length from your negative thoughts. Part of the observing of "in the moment" involves that you have thoughts about fears. Just note it as a thought, it's part of that list of a dozen things happening right now. Got your list of a dozen things, now observe that fear or thought. did it change anything substantive in the 11 other things? probably not. It's just a thought.

I know this technique sounds 'weird', and that it 'can't change anything', but hey that's 2 more things to add to the little list of stuff / thoughts happening right now.

Give it a try on a regular basis you may be pleasantly surprised.
Hope this helps.

Offline wolfter

  • Member
  • Posts: 5,470
Re: As time goes by my "exit" looks uglier & uglier...
« Reply #5 on: July 20, 2012, 06:52:18 am »
I think it's natural for all of us in this exclusive club to go through these periods.  I went through a very dark period not long ago and couldn't figure out what was going on.  I thought by internalizing it and focusing on it, that I'd be able to work it through.  It suddenly occurred to me that this was actually causing a worse mindset.

Is it possible a lot of these thoughts are rooted in what we witnessed and dealt with in the early days?  Almost like PTSD?  I think that fighting so hard for our very existence has left us with a "what now" existence.  I made an earlier thread about waiting for the shoe to drop again.  It's difficult to not expect this to happen based on our histories.  The shoe will drop, that's the function of life. 

One quote that brought peace to me (sorry I can't recall where I read it);  "If you live life mentally preparing for all the negatives that will happen and it actually happens, then you've lived and experienced it twice".

Take care and best wishes.

Wolfie
Being honest is not wronging others, continuing the dishonesty is.

Offline Mishma

  • Member
  • Posts: 234
  • HIV drugs are our Allies but hardly our Friends
    • Marquis de Vauban
Re: As time goes by my "exit" looks uglier & uglier...
« Reply #6 on: July 20, 2012, 01:35:20 pm »
Dave

As a 27 year survivor and someone who has knocked on heaven's door one too many times I can relate and I am sorry you are suffering now.

Sage advice from Harlymc who is describing a key aspect of many eastern philosophies but also a modality of "Mindfullness" training as practiced by  specifically trained psychotherapists in the US.

I'm in no hurry to die and I have much to live for (a new grandchild on the way) but I'm not afraid to confront perhaps life's greatest mysteries-Death. Since it is inevitable for us all it is counterproductive to fear and dwell on it.

Despite physical and mental handicaps and now suffering severe vision problems I find reason to live every hour of the day. If not for myself then for my family who rely on me for strength in the face of adversity.

In my own life I think my flexibility has been one of my greatest assest. When I could no longer work I volunteered. When I could no longer run I walked. When tinnitus and hyperacusis made playing my guitars and mandolins excruciatingly painful I started to draw and paint. I think you get the point. Life is short but it is wide. 
2016 CD4 25% UD (less than 20). 30+ years positive. Dolutegravir, Acyclovir, Clonazepam, Lisinopril, Quetiapine, Sumatriptan/Naproxen, Restasis, Latanoprost, Asprin, Levothyroxine, Restasis, Triamcinolone.

 


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