Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 22, 2014, 03:39:18 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 631467
  • Total Topics: 47800
  • Online Today: 279
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Positive as all hell  (Read 5421 times)

0 Members and 1 Guest are viewing this topic.

Offline Dale Parker

  • Member
  • Posts: 266
Positive as all hell
« on: April 20, 2009, 10:04:40 PM »
I'm a 51 year old gay man living in Canada.  Except for the last year and half I have been very healthy.    In September of last year, I was laid off after 10 years with the same company.  That was actually a relief, as it was a very high-pressure job.  At thanksgiving my 18 year old cat that was deaf suddenly went blind.  November first my 99 Honda SIR was stolen and trashed.  In the last 33 years I have only had 9 days of work due to sickness (nothing other than sore throats and some back problems).  18 months ago I got shingles.  I went to the doctors and he said that it was due to stress (Christmas was coming, I had a very stressful job, and it was dull and gloomy out).  That cleared up and 3 months later I started to get itchy on my lower legs and lower arms. My legs were also very dry.  I would scratch so much that I would actually bleed.  Going back to the doctors and he said that it was most likely allergies.  He gave me a prescription for Rectine and told me to change bath, laundry and dish soaps. I went back to him a month later and more Reactine more changes in everything.  Finally he got me to see a dermatologist.  She had me come back 6 times and finally did allergy testing and took a biopsy of my skin.   The allergy test came back negative and the biopsy showed that I was on high blood pressure medicine which I was not.  I asked her why my legs were turning a pinky purple colour and she didn't know.  I saw 5 other doctors at various walk-in clinics as I had Thrush mouth after one of them gave me Prednisone.   None of them could tell me either what I had or cure me.   In early February of this year, I read an article in the paper about a sports star who was being sued by his ex girlfriend as he had given her HIV.  The article listed the symptoms.  I had most of them.  It took me 6 weeks to get my head wrapped around the fact that I was most likely HIV positive.   I went to a STD clinic to be tested.  Usually there was a 2 week waiting period to be tested for HIV.  After talking to me and looking at my skin the nurse did the quick HIV test right away.  One blue dot meant I was fine, two blue dots and I was positive.  The test came back two dots.   I was a bit surprised but was expecting it after reading the newspaper article.  I went to see another person and he did some blood tests and looked at my skin.  He made an appointment with one of the top Aids specialists in Canada for the next morning.  After I got home I started thinking;  I didn't have to wait two weeks to be tested as was clinic policy and I was going to a specialist first thing in the morning.  I must really be sick.  The specialist sent me for blood test and I went back a 2 weeks later for the results.  Boy was I shocked.  He said that I had obviously been infected for a long time.  I was shocked as I always played safe.   I had done some reading on the internet and knew what the numbers should be.  I also read on this site what other people’s numbers were and what health problems they were having.   My CD4 count is 21 and my viral load is over 500,000 (not typos).   The doctor wanted me on the Aids drugs right away.  I asked how much this was going to cost as I was on unemployment insurance bringing in $1500 a month,  my rent is $1058, car insurance is $120 and internet / cable is $140.  Not much left over for food and gas let alone paying off my charge cards which I owe about $33,000 on.  He said that prescriptions could cost me between $2500 and $4000 a month.  I almost died.  He got me some fee preventative drugs from the hospital and worked his butt of to get me onto a drug program.  I started the aids drugs 10 days ago.  I do have some minor side affects but nothing to complain about.   He also said that my life expectancy is less than two years (I made and appointment to see him in 5 years and I plan to keep it).  The clinic hooked my up with two Aids support groups.  The one PWA (People with Aids) is amazing.  The person told me it's basically one stop shopping.  They interviewed me and recommended some disability programs for after my unemployment runs out. He also took to a lady to see about subsidized housing, another lady to see about welfare and a counselor to talk to.  They also have a host of other services such as free haircuts on Tuesdays, free massages once a week, Chiropractic services, some financial help, two food bank programs and a lot more.  This really blew me away.  I have one of the best doctors in North America and support groups that are really out of this world.  The biggest worry that I had was telling my family.  My parents passed away 6 years ago so it only left my two sisters and brother.  My older sister is listed as my next of kin so I told her first.   I told her everything except for what I had.  She asked what I had and I didn't want to tell her.  Her husband is extreemley homophobic.  He's made some pretty hurtful comments about gays to me and would barely talk to me.  I truly figured if he knew I had Aids I would never see them again.  She said that his mouth was cruel but he always stood thick and thin by family.  I told her that I didn't quite believe her but told her I was positive.   To my surprise (and every one else that knows him) he has pulled a complete 180.  Friendly as pie, supportive and very compassionate.  He helped me with the taxes that I was under extreme pressure to be done as they were needed to get on the drug program.  I never thought that I would see the day the he would help save a faggot’s life.  He took an afternoon off work, did my taxes and drove me downtown to give to the papers in.  Lesson learned:  Friends and family will stand by you, support you and love you even when you least expect it. 
The excellent support I have received from the STD clinic, specialist, hospital, aids support groups as well as friends and family has been really amazing. I'm really in good hands and my attitude is excellent my spirits are up and although I'll never get cured I plan on living life to it's fullest for quite a while yet.

 
« Last Edit: April 20, 2009, 10:07:19 PM by Dale Parker »
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline mecch

  • Member
  • Posts: 11,209
  • red pill? or blue pill?
Re: Positive as all hell
« Reply #1 on: April 20, 2009, 10:29:20 PM »
 "He also said that my life expectancy is less than two years"

Wow!  I am no expert. I hope the sage members of this forum comment on this. I have never heard such a pronouncement in recent years.
I hope this is not the case. Best wishes.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: Positive as all hell
« Reply #2 on: April 20, 2009, 10:39:56 PM »
OMG, your doc actually said that your life expectancy is less than two years?   Dude, get a different doctor.  Whoever you are speaking to is not only seriously misinformed, but also completely devoid of any acceptable bedside manner.   Many of us have been poz for a hell of a lot longer than two years and are doing just fine.  Some of us even came back from viral loads as high as yours.  Nothing is certain with this disease, but your life expectancy is not two years if you take care of yourself.

Best of luck to you and welcome.

Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Positive as all hell
« Reply #3 on: April 21, 2009, 08:18:01 AM »
Hello Dale

Welcome to the forums. 

I was in pretty much your shoes three years ago, a year or two younger, 19 more tcells but with a pretty nasty case of pneumonia.  It's quite a shock to get the diagnosis and then to navigate all the information (and misinformation) out there.  But it sounds like you've found great support!

If you haven't found them yet, the lessons on this site are a very helpful way of learning more about what is available today.  They are under Treatment at the top of the page, or you can just click here http://www.aidsmeds.com/articles/Introduction_4702.shtml

About that 2 year life expectancy number, sounds like maybe your doctor was telling you the number for those who don't start AIDS drugs (HAART).   It is better for those who start HAART.  And life expectancy is an average for how long people live rather than a clock ticking away; some people live longer and some shorter, so it isn't really useful as a guide to plan your life.

But buried in the life expectancy stuff is some very important information about your risks.  For those of us who are diagnosed very late, the most dangerous year of our lives is the year after diagnosis.  The majority of us do fine, and life expectancy actually increases after the first year.  But while you are still adapting to a new drug regimen and your immune system is still quite weak it is important to take extra precautions to protect your health.   These include hygiene and handwashing, wearing gloves to change the pet litter (or getting a friend to do it for a while), avoiding potential sources of infection, washing food, etc.  And, as someone who hasn't taken a lot of sick time in the past, you need to become comfortable with the idea that you should talk to the doctor about how things are going for even minor ailments.  If you feel at all uncomfortable about it ask your doctor if you are coming in too often; you are probably used to toughing it out and, for this year, that is probably not the right approach.

So, especially this first year, take care of yourself and be as healthy as you can be. Hope to hear more from you.

Assurbanipal



5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Positive as all hell
« Reply #4 on: April 21, 2009, 09:30:52 AM »
Welcome to our forums, Dale.  Glad you found us!

Amazing story, but can I ask a favor.  It's hard to read postings like yours that are one long paragraph -- it's hard to not get lost as you're reading it.

Can you break up your future posts into paragraphs like Assurbanipal does above?  Thanks for helping!

Peter Staley
Forums Moderator

Offline Snowangel

  • Member
  • Posts: 1,413
Re: Positive as all hell
« Reply #5 on: April 21, 2009, 10:53:04 AM »
Welcome, Dale!
Glad you have found such great support and help.
Thanks for sharing your story.
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline Dale Parker

  • Member
  • Posts: 266
Re: Positive as all hell
« Reply #6 on: April 21, 2009, 01:58:36 PM »
Thanks for the support and comments.  I will break my stories down to paragraphs but wasn't sure if there were space or word count restrictions on this site.
      I do realize that the two year life expectancy thing is a worst case scenario.   That was actually in a form that the doctor had to fill out for the subsidized housing people.  The choices that he had were "less than 2 years, 2 to 5 years and 5 to 10 years and up.  Like I said I have already made an appointment with him for March 27th 2014 which is 5 years to the day from my diagnosis date.  I plan on keeping that date and making an other appointment for 2019 right after that appointment.  With the doctor being very well respected in Toronto who deals with the housing people a lot, he probably lowered my expectancy to get me into subsidized housing ASAP but at the same time if all the forms he filled out said less than 2 years his creditability would be zero. Besides I have things to do and places to go before I croak.  I'm not going to let this stand in my way.  I may have to make accommodations for it, but it's not going to stop me from enjoying life to its fullest.
     My personality is that I'm fairly easy going, flexible, with a happy go lucky attitude.  In business I needed facts, and figures and back up plans.  Doctors go on worst case scenarios and "If this drug does not work we have others that do." The advancements in Aids treatment is constantly changing for the better.  People who were diagnosed 15 years ago as positive and were given 5 years or less are still alive and kicking today and likely will live for another 15 as long as they don't get run over by a bus. 
     According to the doctor and looking back at it now 3 of the 7 doctors I saw in the last 18 months should have sent me for further testing.  He actually wants to take action against them.  I'm sure if I got diagnosed 18 months ago my numbers would be a lot higher and prognosis would be better.   Thankfully I read that article in the paper and basically diagnosed myself.  It took 6 weeks for me to get my head wrapped around the fact that I was most likely positive.   I never went thru the "Woe is me stage" but did get myself scared shitless.  Mostly the fear was, I didn't know anything about being positive and what to expect.  I was even more afraid of the pain I was going to cause my family and friends when I told them.  Fear can be a good thing.  It motivated me to get educated.  I went on the computer and went to every HIV / Aids site I could find.  I also went to every blog and forum site and educated myself.  Education took most of fear I had away and to be honest left me with a few minor concerns.  I was afraid to tell my family but I figured that they should be prepared rather than find out if / when I end up in hospital.  When I had the basic facts I told my siblings.  When I had more facts I told my nieces and nephews.  They were starting to ask questions about my health.  I have lost 45 pounds (the first 30 I didn't mind LOL). 
Now that my medical stuff is done and I have meds it's time to work on getting my finances in order. 

 I know that I'm new here and newly diagnosed but if I can offer some advice to the other newbie's I'd like to.
1) Its ok to be afraid.  Whether it's the HIV, coming out and telling family and friends or what your new life is going to be like.  It's ok to be confused, depressed (as long as it's not too deep) and feel like your all alone in this word. 
But the cures for these are simple.  Fear can be cured with education.  You all have computers.  Go on the net and learn all you can.  Medical sites and HIV/Aids sites have the best information.  Forums and blogs (no dis-respect intended) can be a bit dicey.  Don't take them as gospel.  Use them as a guide.
Confusion will pass with acceptance.  Talk to people.  There are lots of people who will listen to you. Write down your fears, thoughts and emotions.  Once on paper it's amazing how clear things get.
Being a little depressed is ok but if you think you need help get it.  Whether is from an aids councillor or professional help.  Don't be afraid or ashamed to get the help you need. These people are there because they want to help you. 
      You are not alone in this world this site has 9496 members plus tons of others who are not but visit here regularly.  Everyone can help you or steer you in the right direction if they can't.
Above all no matter how bad things get every cloud has a silver lining.  Some times it's difficult to see but it is there. 
Your medications are important but just as important is your attitude.  Keep it positive.  Keep laughing, it is the best medicine. My theory is Id rather the tears running down my face be from laughing than from sadness.
I hope this helps some of you.  I know that it's helped me.  Thanks for listening.
P.S. I promise to make my next post shorter.
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline jason35

  • Member
  • Posts: 15
Re: Positive as all hell
« Reply #7 on: April 21, 2009, 04:00:05 PM »

glad your posting in the forum Dale and welcome, i kinda new myself well to posting that is ::)

the 2 year life is explained by the doctor wanting to give the best case to the housing people, fair play to him!!  glad that is cleared though for newbies reading, there is a long life out there for us guys!!

im working on the postive outlook as i went through a period of total self pity but reading your posts they are so upbeat!!  keep it up i enjoyed your posts 8)
never surrender

Offline angelsinamerica

  • member
  • Posts: 1
  • I have a dream
Re: Positive as all hell
« Reply #8 on: April 26, 2009, 04:05:21 PM »
Dear Dale,
First of all it is my first post here and I must say I'm a bit nervous  ;) combine that with the fact that English is not my mother tongue and you'll understand why  :) so forgive me if I have some mistakes.

I read your story twice and I'm overwhelmed. not only by your amazing story but also by your attitude, your courage and your spirit. not very often one have the chance to hear such a story and I must say that yours is inspiring (like many others in this amazing site). and I mean every word. I'm happy you caught it on time and that you found someone to talk to, support you and be there for you.

From the other side of the globe I wish you only the best of health and I hope you will stay around for many more years. and I must quote Peter Staley who said, that family and friends are better then any meds (I hope I quote him right).
Take a good care of yourself!!
Billy
I have a dream :-)

Offline Pepino2

  • Member
  • Posts: 36
  • Facial wasting need not be...Teach PMMA!
Re: Positive as all hell
« Reply #9 on: April 26, 2009, 04:41:00 PM »
Angel,

You also deserve a warm welcome to this site.  Posting for the first time is always a bit nerve wracking... you've done it in a very postive way.

Once again a warm welcome and keep contributing your love, your thoughts and your smile.

Pepino2

Offline Dale Parker

  • Member
  • Posts: 266
Re: Positive as all hell
« Reply #10 on: April 26, 2009, 11:53:46 PM »
Thanks to all the people who have given me support on this site.  I have read some of your stories and figure that there are a lot of others who are worse off than myself (it doesn't look like many but there are a few).  I've found courage, hope, laughter and tears in the stories of your lives.  I hope that if I get seriously ill those stories will inspire me.   
RE Assurbanipac's comments:  Sorry that I did not get a chance to address them earlier but I'll do it now. 
   Doctors usually give the worst case scenario I their prognosis's.  They do this to cover their butts (which I don't blame them).  If worst come to worst and I don't make it 2 years they don't have to be worried about being sued.  If I live longer then they look like heroes.  I say that toung in cheek LOL. 
   Having a "deadline" actually is helping me plan my life for things I really want to do but have been putting off for a long time.  There are a lot of things further out that I plan on being around for.
  I did have a cat who would have been 19 years old in August.  She was 95% deaf and had arthritis in her back end.  In October last year she went totally blind over night.  With her problems and possible infections for me from her litter box I had her put down.  I was also worried that if I ever had to be hospitalized their would be no one to look after her. She was not the friendliest cat and being blind she couldn't be  moved to a strange place.
  Although my place is fairly clean I'm not a clean fanatic. I heard a while ago that you have to eat a pound of dirt before you die. I agree with that for the most part.  Today's world is going ultra sterile and I believe that weakens the immune system as it's not used to regular germs.  I do wash my hands a lot more and am being extra careful with food washing and cooking.  I'm also trying not to pet strange pets that I meet.  I love animals and always talk to them and pet them.  If I do pet them I always wash my hands as soon as I can.
   a few weeks ago I did have a chat with the doc re pestering him too much.  He says phone / drop in to see him any time.  If I'm not sure if it's worthy of his time he gave me the names of two nurses (one of which should be there at any time) and I can talk with them.  They can pass it along to the Doc if he needs to give it his attention.  Now that I have my drugs sorted out (I'm on kaletra, truvada, septra, azithromycin and fluconazole (for thrush mouth)) I can start with my other concerns.  When I was first diagnosed I started a spread sheet to track medicine times and amounts.  This grew to list side effects (if any), track my weight, night sweats (none, light, medium, heavy and Noah get the ark ready).  It also list any aches pains, sores etc that I have.  I'll go over it with him on Wednesday when I see him.  I'll also start my hepatitis shots. 
Although I waited a few weeks from the time I diagnosed myself till I got tested I'm glad I did it. I wouldn't tell anyone to wait but I needed that time.  I gave me time to accept it, get my head around it, and think things through and organize myself. 
Thanks for the great advice.


 . 
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline PeteNYNJ

  • Member
  • Posts: 979
  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: Positive as all hell
« Reply #11 on: April 27, 2009, 05:26:58 PM »
Hey Dale

Just wanted to say welcome to the forums.  This site was really helpful for me when I was first diagnosed so post away!

Pete

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Positive as all hell
« Reply #12 on: April 28, 2009, 04:52:42 PM »
Welcome to the Forums and thank you for sharing your story.

I was wondering, since you were initially concerned about the price of the drugs and had to be put on a drug program, don't they have universal health care in Canada?

Thanks ;)

Offline Dale Parker

  • Member
  • Posts: 266
Re: Positive as all hell
« Reply #13 on: April 28, 2009, 07:47:41 PM »
Hi Inchlingblue:
We do have universal health care but that applies to hospitals.  If you get put in hospital be it for stitches or a heart transplant it is free. Any medical treatment or drugs that you get in hospital are covered.  Most doctors fees fees (at their offices are covered).  If you want a non medically necessary procedure such as a boob job or face lift you have to pay from your pocket. 
   When you go to your doctors office and he gives you a perscription you have to pay for it out of your own pocket.  That is unless you have company or private insurance coverage.  My father worked for a very good company and all of his perscriptions cost him twenty five cents each. The company I worked for had us pay 50% and the insurance paid 50% but that was only up to a maximum of $1000.00 per year.  They treated their employees like crap. Very small companies (2 to 50 employees) may not have any company insurance.  Those people will have to either purchase private insurance or pay full price for their drugs.
If you are on welfare (meaning you can't work and the government is paying your way) the government pays for your drugs.
   That's the basics of Canadas universal health care system.
I hope this answers your question.
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Positive as all hell
« Reply #14 on: April 28, 2009, 08:20:20 PM »
It does, thanks. I guess there is a big "hole" in coverage for anyone with a condition such as HIV, for which the medications are so astronomical in cost. So when it comes to prescription drugs I suppose it's similar to here in the US, you have to have your own insurance  and if not, you have to hope that you qualify for some sort of program such as ADAP here (maybe the drug program that you qualified for is similar to ADAP here, which covers HIV drugs for those people without insurance or any other way to pay for them).

I really hope that when they overhaul health care here we won't have to worry anymore about lapses in coverage and not being able to access meds, it's probably the single most stressful thing about HIV nowadays.

Offline yesican

  • Member
  • Posts: 27
Re: Positive as all hell
« Reply #15 on: April 30, 2009, 12:01:42 AM »
"He also said that my life expectancy is less than two years"

Wow!  I am no expert. I hope the sage members of this forum comment on this. I have never heard such a pronouncement in recent years.
I hope this is not the case. Best wishes.

Offline yesican

  • Member
  • Posts: 27
Re: Positive as all hell
« Reply #16 on: April 30, 2009, 12:16:21 AM »
I'm a 51 year old gay man living in Canada.  Except for the last year and half I have been very healthy.    In September of last year, I was laid off after 10 years with the same company.  That was actually a relief, as it was a very high-pressure job.  At thanksgiving my 18 year old cat that was deaf suddenly went blind.  November first my 99 Honda SIR was stolen and trashed.  In the last 33 years I have only had 9 days of work due to sickness (nothing other than sore throats and some back problems).  18 months ago I got shingles.  I went to the doctors and he said that it was due to stress (Christmas was coming, I had a very stressful job, and it was dull and gloomy out).  That cleared up and 3 months later I started to get itchy on my lower legs and lower arms. My legs were also very dry.  I would scratch so much that I would actually bleed.  Going back to the doctors and he said that it was most likely allergies.  He gave me a prescription for Rectine and told me to change bath, laundry and dish soaps. I went back to him a month later and more Reactine more changes in everything.  Finally he got me to see a dermatologist.  She had me come back 6 times and finally did allergy testing and took a biopsy of my skin.   The allergy test came back negative and the biopsy showed that I was on high blood pressure medicine which I was not.  I asked her why my legs were turning a pinky purple colour and she didn't know.  I saw 5 other doctors at various walk-in clinics as I had Thrush mouth after one of them gave me Prednisone.   None of them could tell me either what I had or cure me.   In early February of this year, I read an article in the paper about a sports star who was being sued by his ex girlfriend as he had given her HIV.  The article listed the symptoms.  I had most of them.  It took me 6 weeks to get my head wrapped around the fact that I was most likely HIV positive.   I went to a STD clinic to be tested.  Usually there was a 2 week waiting period to be tested for HIV.  After talking to me and looking at my skin the nurse did the quick HIV test right away.  One blue dot meant I was fine, two blue dots and I was positive.  The test came back two dots.   I was a bit surprised but was expecting it after reading the newspaper article.  I went to see another person and he did some blood tests and looked at my skin.  He made an appointment with one of the top Aids specialists in Canada for the next morning.  After I got home I started thinking;  I didn't have to wait two weeks to be tested as was clinic policy and I was going to a specialist first thing in the morning.  I must really be sick.  The specialist sent me for blood test and I went back a 2 weeks later for the results.  Boy was I shocked.  He said that I had obviously been infected for a long time.  I was shocked as I always played safe.   I had done some reading on the internet and knew what the numbers should be.  I also read on this site what other people’s numbers were and what health problems they were having.   My CD4 count is 21 and my viral load is over 500,000 (not typos).   The doctor wanted me on the Aids drugs right away.  I asked how much this was going to cost as I was on unemployment insurance bringing in $1500 a month,  my rent is $1058, car insurance is $120 and internet / cable is $140.  Not much left over for food and gas let alone paying off my charge cards which I owe about $33,000 on.  He said that prescriptions could cost me between $2500 and $4000 a month.  I almost died.  He got me some fee preventative drugs from the hospital and worked his butt of to get me onto a drug program.  I started the aids drugs 10 days ago.  I do have some minor side affects but nothing to complain about.   He also said that my life expectancy is less than two years (I made and appointment to see him in 5 years and I plan to keep it).  The clinic hooked my up with two Aids support groups.  The one PWA (People with Aids) is amazing.  The person told me it's basically one stop shopping.  They interviewed me and recommended some disability programs for after my unemployment runs out. He also took to a lady to see about subsidized housing, another lady to see about welfare and a counselor to talk to.  They also have a host of other services such as free haircuts on Tuesdays, free massages once a week, Chiropractic services, some financial help, two food bank programs and a lot more.  This really blew me away.  I have one of the best doctors in North America and support groups that are really out of this world.  The biggest worry that I had was telling my family.  My parents passed away 6 years ago so it only left my two sisters and brother.  My older sister is listed as my next of kin so I told her first.   I told her everything except for what I had.  She asked what I had and I didn't want to tell her.  Her husband is extreemley homophobic.  He's made some pretty hurtful comments about gays to me and would barely talk to me.  I truly figured if he knew I had Aids I would never see them again.  She said that his mouth was cruel but he always stood thick and thin by family.  I told her that I didn't quite believe her but told her I was positive.   To my surprise (and every one else that knows him) he has pulled a complete 180.  Friendly as pie, supportive and very compassionate.  He helped me with the taxes that I was under extreme pressure to be done as they were needed to get on the drug program.  I never thought that I would see the day the he would help save a faggot’s life.  He took an afternoon off work, did my taxes and drove me downtown to give to the papers in.  Lesson learned:  Friends and family will stand by you, support you and love you even when you least expect it. 
The excellent support I have received from the STD clinic, specialist, hospital, aids support groups as well as friends and family has been really amazing. I'm really in good hands and my attitude is excellent my spirits are up and although I'll never get cured I plan on living life to it's fullest for quite a while yet.

 
Dale,

my partner since early 06 tested poz feb 07.  His cd4 count was 20 and vload was off the charts, his drs words. Today april 29 th after visit to the dr his cd4 is 252 and voad is undectable and has been since nov 07. Never did we get a life expectancy like you did. He is healthy as a horse and never sick other htan a common cold and he;s a smoker. Hope this gives you a little hope. im new to this myself so im not sure im posting right or wrong. I also tested poz in late dec. 08 and learning how to deal with all this myself but I have seen how things ca go from bad to much better.

Offline Dale Parker

  • Member
  • Posts: 266
Re: Positive as all hell
« Reply #17 on: April 30, 2009, 02:32:14 PM »
Hey Yesican:
Thanks for the encouragement.  There are not many people out there with the low numbers that I have.  A few that have or have had low numbers in the past have written in, in very positive ways.  It's good to know that the counts can rise to decent or pretty good levels. 
I will never loose hope.  My grandmothers side of our family has very strong genes which I have inherited.  I'm sure I will be around 10 years or more. Doing it with a CD4 count in the 200's to 300's will be a lot easier.

Again thanks for the encouragement. I wish you and your bf all the best
take care
Dale.
« Last Edit: April 30, 2009, 02:34:16 PM by Dale Parker »
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline nbalt2

  • Member
  • Posts: 8
Re: Positive as all hell
« Reply #18 on: May 06, 2009, 05:47:21 PM »

This posting made me a bit nervious.  My partner & I have applied to emigrate to Canada.  We may be approved.  He is negative and of course I am poz.  I had understood that Canada has universal health care.  If I give up my health coverage here in the US, will I not have coverage in Canada?  Any ideas?

Offline FMHammyJ

  • Member
  • Posts: 10
Re: Positive as all hell
« Reply #19 on: May 06, 2009, 10:25:19 PM »
Dale: I am curious what part of Canada you live in...In BC all HIV drugs are covered by the St. Pauls Hospital Centre for Excellence.I am on disability, and for the 17 years I have used anti-retrovirals, I have not been charged one cent. The current provincial govt realized years ago that it was cheaper to pay the cost of the drugs and keep us well, than have us progress to more serious illness. Of course, it means that you in fact become a long term study subject...but its a small price to pay,as they will ship any HIV drugs anywhere in the province for you, free of charge. the only stipulation is that you adhere to your meds, and get regular blood work done. I wish you well, and I am hoping for a speedy recovery of your immune system once you get started on your meds!.Remember despite some side effects you may initially feel, the drugs are your friends...Relax(tough I know!) and youll do fine.....Cheers, Patrick    i iur that s

Offline Dale Parker

  • Member
  • Posts: 266
Re: Positive as all hell
« Reply #20 on: May 08, 2009, 11:33:57 AM »
Hi nbalt2:
Which province are you planning to move to?  Each province has it's own health care system.  I do have a link that may help you.
http://immigrationguides.com/content/view/36/74/1/2/
Your best bet would be to do an internet search for hiv/aids support groups in the area that you are planning to move to. Most major cities have great groups. If they don't have the information that you need they can steer you in the right direction.   If your planning on moving to Toronto let me know and I will give you some good links.

Hi FMH:
I live in Toronto Ontario.  I wish I lived in BC. I thought seriously of moving there.  It is really beautiful and the pace is a lot more relaxed than Toronto.  In Ontario most hospital visits are covered unless they are cosmetic (i.e. boob jobs or face lifts)  Right now they have me on the Trillium Health Plan, but there is a deductable. It's based on your earnings for the last two years.  Based on my salary for last year ($56000) it should be about $1600.00 a year. I got laid off in September last year and now I get $1500 a month in unemployment insurance.  I got screwed royally on that. With my CD4 count being 21 my doctor told me I can't work until my health improves. My regular Unemployment should have run out in December of this year.  Medical unemployment only goes for 16 weeks which will run out in August. When that runs out I will have to go on Ontario Disability Support Program.  I'm still checking that out so I may be wrong on a few things here.  I believe that on ODSP my drugs, dental and eye glasses will be covered 100%.  The problem being it's only $1200 a month.  My rent is $1058.  Hopefully I will get into subsidized housing where you only pay 30% of your income.  If not the cheapest bachelor apartment that I have found is $700 a month.
It's going to be an interesting few months. 
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline FMHammyJ

  • Member
  • Posts: 10
Re: Positive as all hell
« Reply #21 on: May 08, 2009, 12:01:18 PM »
Dale: Here is a link to the BC Centre for Excellence   http://www.cfenet.ubc.ca/content.php?id=11   Hope it works for you if not....just google it....And  while I love Toronto, yes I think you would find the West coast lifestyle pace a bit more amenable to your full and complete recovery.....:) Good Luck and maybe well meet at the St. Pauls pharmacy some day......Cheers, Patrick     v

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.