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Author Topic: Everything is up in the air.  (Read 1137 times)

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Offline countrymanPete

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  • Posts: 13
  • Just your average Joe
Everything is up in the air.
« on: February 04, 2014, 12:02:30 AM »
  I don't really feel great now, and to be perfectly honest I don't think there is an answer for me.  I am not even sure what I'm asking.

     In 2005 I met someone on line, I was in the UK, he in Australia.  So I came to Australia for a holiday.  On the tourist Visa, which lasts a year you have to leave the country every 3 months which I did.  Went to NZ for the weekend, However when I got back to Aus, from NZ, the second time, I was back in Aus for 6 days and rushed to Hosp by Ambulance as my painful left leg had gone blue.  I was diagnosed with Deep Vein Thrombosis.  I also had to start ARVs because my T cell count dropped to 105, with VL over a million, 7%.    I was pretty sick, clots in my lungs liver and spleen, and the main clot in my left leg to just below my heart.   
    To cut a very long story short, it took about 4 years to get over.   The only lasting damage is loosing the feeling in my left leg below the knee.  Since then it's been a catalog of health issues, insulin dependent, live cirrhosis,  sciatica, and constant diarrhea, neuropathy, impaired vision and the latest fluid swelling on my bone joints.  The relationship I was in ended, and I now have a severe depression, medicated.  I now live on an isolated property, in rural NSW. I don't get to see a Councillor or get any  Psychologist help because there is a waiting list for these services.  I'm feeling isolated and alone.
      My Dad is terminally ill, and I've been advised I must never fly again, there is too great a risk with flying, so my only contact with home is on Skype.   I tried to get Insurance as i wanted to take the risk, but cannot get Insurance to fly.  So technically I was/am stranded here in Australia.  The cost of going by boat is more than I can save, I get a very small state pension to survive on.  It only just covers the bills.   So I have permanent residency here, I know there are worse places I could have been stranded in, but I cannot help but feel like shit.
        Despite multiple health issues the state says I'm not sick enough to get any form of disability help, and I am told in May of this year I will have to find full time work.   Some days I just can't do anything.  Last year for example I was in Hosp 6 times, totaling just over 5 months.  So along with all the other meds I have Temaze, Endone, Endep amd Mirtazapin.   I get by, but I'm not living, I'm existing.   I've tried contacting Rural HIV services etc, I got one email back, and I get the feeling they are just not interested.  I've written and phoned a lot but no one wants to help.  I got the impression they think I'm a nut job with all the phone calls.  I'm tired of people saying they'll call back, or take a message and nothing happens. I even tried the HIV legal Volunteers but nothing.  They said they would look into  trying to get me onto a disability pension, but every time I try to contact them 5 times so far, I get no response.
       I am not moving from here, I can't afford to.  I cannot afford living in the city on the money I get. I do have a good GP, and see excellent specialists in Melbourne and Sydney, I've even been taken by Air Ambulance, so living here is safe. Just I am finding it difficult to want to keep struggling to survive. Frankly I don't and I just don't see where to go from here.     
       At least my T cell count is now around 1100, VL Undetectable, and 38%, but everything else is a problem.   I smoke Cannabis now, to help me eat, as I eat very little.  I don't look good, so avoid going into town unless I absolutely have to.   My House mate friend Jenny, does the local shopping.   
       I feel quite alone now, I just don't know what to do about it.  I have no sexual appetite, I doubt if I can maintain an erection for longer than a minute anyway.  I don't bother trying anymore.  No point.  I am unlikely to ever meet anyone anyway.
 This forum is my only HIV contact.  I just wondered if anyone had  any ideas how i can improve my situation?
       
       
Everything should work like a well oiled ship

The titanic was a well oiled ship.

Offline countrymanPete

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  • Posts: 13
  • Just your average Joe
Re: Everything is up in the air.
« Reply #1 on: February 04, 2014, 12:10:30 AM »
  I just read Alan B's topic, and I can identify with that.   I bottle everything.     I keep myself to myself, I'm almost a hermit.  I have big issues trusting people, and just can't trust people again if they let me down.   I'm not angry, but I believe my getting HIV, was entirely my own fault.  At the time I was drunk and stonned, on various things.  It just seems to me that in life i made many wrong choices and now just have to live with it.  Same shit, different day.
Everything should work like a well oiled ship

The titanic was a well oiled ship.

Offline countrymanPete

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  • Posts: 13
  • Just your average Joe
Re: Everything is up in the air.
« Reply #2 on: February 05, 2014, 07:22:01 AM »
    I decided to get on my bike and go to Melbourne in the morning to go see the HIV specialist.  It's just the 5 hour ride each way.
Everything should work like a well oiled ship

The titanic was a well oiled ship.

Offline Ann

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  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Everything is up in the air.
« Reply #3 on: February 05, 2014, 08:31:57 AM »
I hope you can access the help you need, Pete. Reaching out here is a really good starting point - there's plenty of love and support to be had here. Many have made life-long friends here and you can too, so keep posting so you can get to know us and we can get to know you. :)

I hope by bike you mean motorcycle - a five hour bicycle ride would be exhausting! :o
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jeff G

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  • How am I doing Beren ?
Re: Everything is up in the air.
« Reply #4 on: February 05, 2014, 08:38:29 AM »
Welcome Pete ! .

Offline countrymanPete

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  • Posts: 13
  • Just your average Joe
Re: Everything is up in the air.
« Reply #5 on: February 09, 2014, 12:33:33 AM »
   Thank you Anne and Jeff.   
     
         I know the weather is crap in the UK now, and here it's stinking hot, 49C/120FI believe. 
         I read openers from others on this Forum, and replies and me myself I, can draw little comfort from them.   My own circumstances  don't enable me to fix a lot of the issues I have, so I feel as fragile about everything as if I was newly diagnosed, and it's been a long time now. 11 years.   I should be in a better space but I'm not.    I live where i live because the pension I get means I cannot afford to live in the city.  So Melbourne, is like 270K away. Tho I'm in NSW, Sydney is about 800k. My nearest shop is 22K, no neighbors withing walking distance.    Money is a big thing for me, cos most of the time I don't have any.  I don't see all the great wonderful things that everyone else seems too. It's just same shit, different day.  So I'm lurking in the back ground of the forums, because I have nothing positive to say, and right now I'm no help to anybody. 
Everything should work like a well oiled ship

The titanic was a well oiled ship.

Offline Jeff G

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  • Member
  • Posts: 10,754
  • How am I doing Beren ?
Re: Everything is up in the air.
« Reply #6 on: February 09, 2014, 12:50:03 AM »
Pete ... Your story sounds very much like my story did when I found the forum .

There will always be some one here to talk to as you find a way to a happier life . Its good you are here and able to talk about not being where you want to be in life at this point in time . I think you will find many of us here can identify with what your dealing with . You are not alone while you figure it all out .

Do you have plans to make changes in your living situation ?

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Everything is up in the air.
« Reply #7 on: February 09, 2014, 07:58:50 AM »
Pete, what hiv meds are you on? You've mentioned some other meds you're on, but not the hiv ones.

I'm asking for two reasons. One, if you're on a combo that includes Sustiva (such as Atripla), the Sustiva won't be doing you any favours depression-wise.

Two, if you're taking something like Kaletra or any other PI that is boosted with Norvir, that could be contributing to the diarrhea problem. Have you discussed this problem with your doctor? There are meds you can take to help, such as Immodium, and also sometimes dietary changes will help.

So, what meds?

:)
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jmarksto

  • Member
  • Posts: 465
Re: Everything is up in the air.
« Reply #8 on: February 09, 2014, 12:35:04 PM »
Pete, Welcome to the forums and thank you for posting. 

The reality is that most people on this site are "lurkers" - look under the "Stats" heading to the left for the number of Guests compared to the number of Members online at any one time.  Also, isolation is a very common issue for those of us with HIV (to varying degrees for each individual), and a topic that could use more discussion.

Please know that you are helping others just by posting -- it really helps to know that we are not alone in these issues and hopefully the discussion not only helps you, but a number of others that are reading.

Again, welcome,
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

Offline britchick

  • Member
  • Posts: 419
Re: Everything is up in the air.
« Reply #9 on: February 09, 2014, 04:14:33 PM »
Pete,

Hi!
Well im glad that you joined the site.I've found great support here and it just helps to be able to write my thoughts down.
There are members here from Oz , so maybe you can get a few heads up and also some good advice from them.
I used to be a part time Aussie, lived in Sydney many years ago, then did more travelling.I miss it and was last over in 2010 for a holiday.I brought the worst rain in Sydney for years!!!

I love this site because when you cant sleep, feel crappy or fed up, or just want a laugh, you will know that someone out there has gone through what you have, or still is and then you dont feel so alone.

You might not think you have anything positive to say, but I bet you that your knowledge and experiences are valuable and might help somebody.

britchickx
 

Offline emeraldize

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  • Posts: 3,334
Re: Everything is up in the air.
« Reply #10 on: February 09, 2014, 09:37:16 PM »
Hi Pete. Welcome.

Offline OneTampa

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  • Posts: 2,095
  • "Butterflies are free."
Re: Everything is up in the air.
« Reply #11 on: February 09, 2014, 10:40:33 PM »
Hello Pete and Welcome as a new Board Member.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline countrymanPete

  • Member
  • Posts: 13
  • Just your average Joe
Re: Everything is up in the air.
« Reply #12 on: February 12, 2014, 07:48:19 PM »
Pete, what hiv meds are you on? You've mentioned some other meds you're on, but not the hiv ones.

I'm asking for two reasons. One, if you're on a combo that includes Sustiva (such as Atripla), the Sustiva won't be doing you any favours depression-wise.

Two, if you're taking something like Kaletra or any other PI that is boosted with Norvir, that could be contributing to the diarrhea problem. Have you discussed this problem with your doctor? There are meds you can take to help, such as Immodium, and also sometimes dietary changes will help.

So, what meds?

:)

            Hi Anne,
                            I've been on Truvada since i started ARTS, Currently on Raltegravir.     I have to watch my diet with Diabetes.  I do take Gastro Stop/Immodium, but in very high doses at times, 20-30 a day.
I also take 30 units insulin, twice a day, gliclazide, anti inflamatorys, Endep, Endone, Temaze, Mirtazapine, panadol osteo.     When I started ARTS I did a year on Efavirenz, that made me somewhat more insane than I feel now.     The Mirtapine and temaze/Endone help, but I still get periods of uncontrollable worrying, and I guess looking at it erratic behavior.   I certainly don't feel in control of my health.  I just had to have Cortizone shots in my elbow yesterday, as it swelled to the size of a Tennis Ball, my GP thinks i might have Gout.   I leak protein in my wee.
                           Many years ago I was an intravenous drug user, Ive had Chronic Active Persistent Hepatitis B since 1985, and yes I believe Fibrosis Level2/3, of the Liver.     
                           I turned 50 last July.  I spend 3-4 months a year in Hosp, usually trying different drugs to cope with different problems.  I've allready had my first Hosp Stay this year, tho only for 10 days, my weight went from 98Kgs to 74 Kgs in 6 weeks.  It's the third time I get the weight loss,  and of course blood results reflect it.     Last results were  for Dec, CD4 1152, 38%,VL Undetectable, so I should be great, but then the results go crazy  when i get sick.  I don't understand why with such good results I get so many issues, some related some not.   
                           I do love to live where i do, but it is isolated, and realistically the only support is in the cities, so it is a tough life here.   I won't be moving tho.  I get this house with about 500 acres for $25 a week.  At night it is dark, black dark, with no lights anywhere, you can see the stars, milky way, galaxys, it's incredible.There is even a creek on the property for fishing and swimming.   I could not afford housing in the city, anyway, not on the current Social Security.   Once my bills are payed, I have virtually nothing left. I pay rent, Electricity, phone/internet.  I have a Motorbike because it is the cheapest form of transport.  The nearest Bus stop for Public transport is 17K.    I've started hassling the services in Sydney now, and if i get no joy I'll go to the press.  I even sent letters recorded delivery.   So hopefully something will get sorted.   
                                       Pete
             
Everything should work like a well oiled ship

The titanic was a well oiled ship.

Offline Irish Eyes

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  • Member
  • Posts: 161
Re: Everything is up in the air.
« Reply #13 on: March 01, 2014, 04:11:02 AM »
So i am in fairly constant contact with the person who infected me and he has become very coy with his answers.
For the record he seems the coolest of people.
For the last 2 months weve been texting and on the phone but, I've been trying to sit down and 'talk' about our situation.
Rt now he's in Melbourne and then Sydney for 'work' so I've another 2 weeks to wait to talk.
He's apparently taking the news very hard as he didnt know he was poz (even though he's an escort) and during our last conversation he 'just happened' to mention that he was going to therapy.
I told him that I applauded him for reaching out, but internally I was thinking, 'why r u telling a stranger, you r going to edit what u reveal and let them hear what they want to hear, but it's the people in your life that u should b talking to/unloading so they can understand as they know you, your story in life, and relate and advise accordingly.
I've told him I'm on this site and asked him to visit it but he blew it off.
For me it's been a godsend.
I don't know if this is of any help, but it's always good to vent.
Take care and keep smiling
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87

 


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