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Author Topic: A Year and A Day  (Read 1822 times)

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Offline tsw923

  • Member
  • Posts: 174
A Year and A Day
« on: September 25, 2007, 12:17:13 AM »
Hey Everyone,

I haven't posted for awhile -- I've been lurking and keeping busy.   

Well, its been 13 months since I received a call from my doctor telling me that I had HIV and that I had a CD4 count of 149 and a viral load of ~40,000..  It was 13 months ago when I started taking Bactrim to ward off PCP.  It was a year ago yesterday (on my birthday) that I started taking my first HIV medicines, Sustiva and Truvada. 

So a lot has happened in that year.  I cried a lot, then I moved on (or so I thought).  I found this site and vented when I needed too; asked for and received advice.  I trained for a 1/2 marathon and I walked it.  I took up yoga again.  I made an even better attempt at eating more healthfully.  I prayed a lot.  I tried to make myself not be sad.  I made new friends.  I joined a program to mentor young girls.  I rekindled -- even if briefly -- an old romance.  I validated that I was still sexy, that I was still desirable, that I still had lots of 'needs'  ;D  I told my mom and my brother about my diagnosis -- my sister already knew and she has been my rock.  I told a few friends.  I chose not to tell others.  This past month I finally found a job at home, so I could stop travelling and be at home to enjoy life a bit more. 

Well as the year began creeping up on me, I started getting more and more depressed.  I try to look at this all logically and can't see a reason for it.  My latest numbers are great considering this time last year:  CD4 321(35.7%), VL <75.  My weight is down, though not where I'd like it to be.  The friends that I've chosen to tell have been supportive.  My mom has been awesome.  My brother has been his normal self after getting over the shock of knowing that his big sister has HIV.  My sister has supported me in everything -- who I told, who I didn't tell, taking on the training, everything.  And, she also turned off the ringer and told everyone I had to work when I got too tired to do much.  I left a decent job for another job that will prove to be challenging in a great way.  And I get to sleep in my bed every night instead of a hotel room.  For the most part, with the exception of some minor stomach issues, I've been healthy.  I have to attribute taking the meds to that because trust me, before I started taking the meds in 2006 I was sick with some kind of cold or sinus infection or worse every other month.  I am now taking Atripla -- so I'm down to one pill a night.  I have truly been blessed. 

But for the last week or so, if I could have stayed in bed every day with the covers pulled up over my head I would have done so.  This is pretty unusual for me because I believe in celebrating the entire week leading up to my birthday!  But this year, I didn't want to work out.  If I could have taken off work from the new job I would have.  I found myself laying in bed every morning in almost tears.  Believe it or not, it took me a few days to figure out -- my anniversary was upon me.  And I knew I should be happy and rejoicing -- I know what others have gone through and are going through on the forum -- but I really found it hard to be happy.  And then I felt guilty for not being more grateful and happy about my situation.  And of course that made it worse.  I tried to discuss it with my mom and my sister, but while they were supportive, it didn't help. 

On Saturday I went with my sister, cousin, and some friends to the ren fest.  I lost myself there for awhile -- I spent way too much money on jewelry. :D  I ate food deep fried and on a stick.  I had a great time.  I forgot everything for awhile...  On Sunday, my birthday, I slept in and though I was a bit sad, I got dressed and put on my new necklace and went to church.  That calmed my nerves some.  I spent a quiet afternoon and evening with my parents having dinner and just generally hanging out.  And I felt a little better.  I even managed to get up this morning without feeling the urge to cry.  "This too shall pass" I guess. 

I managed to make it through my first year of treatment.  I thought I had it all under control, but I guess I don't... not completely anyway.   God willing, this time next year I will be less of an emotional mess than I have been this last week or so... :-\ 

Thanks for 'listening'....

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline komnaes

  • Member
  • Posts: 1,893
Re: A Year and A Day
« Reply #1 on: September 25, 2007, 01:10:31 AM »
Hi Ty

I am a recent diagnosis so I don't have the experiences to back up anything I am going to say, but I can really relate to the sentiment of just sleeping the days away and wondering around the house like a zombie. If truth be told I haven't been doing too great - not at all active since my diagnosis, being even more lazier than my sluggish Homer Simpson's way of living while not getting stressed at work, feeling the onset of panic attacks (heart beat faster uncontrollably, feeling very alerted and sweating) more often then I like and spending far too much time online typing all sort of HIV-related search phrases ("living with HIV", "dying with HIV", "happy + HIV", etc) on google.

I just want to say that I am glad I can read about others' experiences - like yours - in here and realize that while it's our own private virus and life me deals my set of cards, being able to share with others really helps me through the past few weeks.

A big anniversary hug to you,

Shaun

(who's again in the office but spending lunch time on the forum)
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Longislander

  • Member
  • Posts: 2,486
Re: A Year and A Day
« Reply #2 on: September 26, 2007, 12:22:05 AM »
Ty,

It's good to see you back posting. ;D  I hope after you typed that post, you were able to reassure yourself that you've accomplished a tremendous amount in your first year of this.  You have. I spent my first 6 months on the couch (when I wasn't at work)!

It's unfortunate that you have to share your Birthday ( Happy Birthday!!! ) with your med anniversary, but after a few years I'm sure you won't be thinking all that much about the meds, and will be able to go back to celebrating your birth with gusto!

I'm happy to hear that otherwise, things are well with you. Keep in touch with us here!!


Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline tsw923

  • Member
  • Posts: 174
Re: A Year and A Day
« Reply #3 on: September 26, 2007, 11:15:56 PM »
Hey Shaun --  I can relate to spending your days online doing searches about 'everything' HIV and then getting more stressed out...  After awhile you'll stop doing all the searches and rely on just a few places (like here) to get your info.  And I have to say reading posts here with people showing all the sides of 'Living with HIV' helps a whole heck of a lot more than reading studies and percentages, etc.  Everyone here has been really supportive so I say lean on us.  and don't hog all the donuts Homer :-)

Hey Paul -- thanks for the birthday greeting.  You are right -- I re-read my post and realized that I have done a lot in a year.  But I wonder if I maybe should have taken a little time to 'melt down'.  But be that as it may, I have jumped into my new job and have started feeling a little more 'up'.   :D  Of course that could be in part because I posted here and got some stuff off my chest.   ;D

I will be lurking and posting a bit more often -- its good therapy :-)  It helps remind me that I'm not alone  :)

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline komnaes

  • Member
  • Posts: 1,893
Re: A Year and A Day
« Reply #4 on: September 27, 2007, 04:21:22 AM »
Thanks Ty

We're talking about 3 weeks now and I am still spending far too much time here and ignoring my day job to such an extend that I really should start picking things up REALLY soon.

But then I think the decision of giving myself the time to be "obsessed" about it is right, though not for much longer. The shock stage is over, no doubt, though the adjusting stage has barely started. There are far too many other issues that are directly or indirectly relating to my HIV+ status that I still haven't begun to deal with; those other problems that for a day or 2 after I got my confirmation I thought would just disappear because being HIV+ trumped them all. It is of course not the case, and dealing with them can now be even more difficult because of it.

And I agree 100% that writing about our worries, fears, etc help a lot.

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,975
Re: A Year and A Day
« Reply #5 on: September 27, 2007, 06:41:45 AM »
Hey Ty:
  It sounds like you've done many positive things your first year after starting meds.   That's really great.  Keep in touch with the people here, and you'll be bound to feel better.  Happy birthday by the way.  It does suck that you share your b.d. with the anniversary of your starting meds, but then again, it's a good thing because those meds are working really well for you.  So, on the day that was the start of your life, you can also celebrate taking something that, along with other things, is saving your life.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline tsw923

  • Member
  • Posts: 174
Re: A Year and A Day
« Reply #6 on: September 30, 2007, 09:55:45 PM »
Shaun,

Do what you need to to help you to start finding the answers you're looking for.  But I would say that if you feel like you are doing it to the detriment of work, you gotta set some boundaries.   Maybe you can take a few days off?  That way you don't have work competing with what you are feeling.  As for adjusting -- I think it starts to come in waves.  Trust me it takes time.  I thought I had 'gotten it together' and then the anniversary rolled around...  One day at a time I guess.

Anyway - I am around so feel free to look me up.

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline tsw923

  • Member
  • Posts: 174
Re: A Year and A Day
« Reply #7 on: September 30, 2007, 09:58:23 PM »
Betty,

Thanks for the encouragement and birthday greetings.  I read your statement 'It does suck that you share your b.d. with the anniversary of your starting meds, but then again, it's a good thing because those meds are working really well for you.  So, on the day that was the start of your life, you can also celebrate taking something that, along with other things, is saving your life.'   I have to say, I didn't look at it quite that way -- Thanks for helping me shift my perspective.

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline komnaes

  • Member
  • Posts: 1,893
Re: A Year and A Day
« Reply #8 on: September 30, 2007, 10:17:29 PM »
Maybe you can take a few days off?  That way you don't have work competing with what you are feeling.  As for adjusting -- I think it starts to come in waves. 

Thanks Ty

I know already there are lot of ups and downs.... as for why I haven't taken the days off though I couldn't do much, well, I thought it would keep me occupied somewhat. And of course we are having a lot of national holidays this month (today being one) so I thought it would be a waste to take time off... ;D

Thanks so much for your supports,

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline AlanBama

  • Member
  • Posts: 3,642
  • Alabama: the 'other' 3rd World Country!
Re: A Year and A Day
« Reply #9 on: September 30, 2007, 11:24:06 PM »
Hi Ty,

Sounds like you've made quite a bit of progress in a year.   Anniversaries can be hard, sometimes it's easy to slip back into depression...

I continue to be impressed with how well some of our newer members have dealt with their diagnosis, and moved forward with their lives.   I know my first year of having HIV (almost 21 years ago) was spent in denial and drinking.

Happy Anniversary, and Happy Birthday!  I've added you to the birthday list.

Hugs,  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 megasept

  • Member
  • Posts: 478
  • Steven here...
Re: A Year and A Day
« Reply #10 on: October 01, 2007, 05:29:06 PM »
So a lot has happened in that year.  I cried a lot, then I moved on (or so I thought).  I found this site and vented when I needed too; asked for and received advice.  I trained for a 1/2 marathon and I walked it.  I took up yoga again.  I made an even better attempt at eating more healthfully.  I prayed a lot.  I tried to make myself not be sad.  I made new friends.  I joined a program to mentor young girls.  I rekindled -- even if briefly -- an old romance.  I validated that I was still sexy, that I was still desirable, that I still had lots of 'needs'  ;D  I told my mom and my brother about my diagnosis -- my sister already knew and she has been my rock.  I told a few friends.  I chose not to tell others.  This past month I finally found a job at home, so I could stop travelling and be at home to enjoy life a bit more. 
Ty

Ty: You're blue and you can't put your finger on it. I know that feeling. Logic and feeling are not exactly compatible. I try to submit everything to reason---which is pretty silly sometimes! Surely, emotions and facts aren't interchangeable. I don't know the answer, but you sound like me. When something is bugging me I pull my hair out and try to figure out exactly what it is. For some reason that always relieves a good deal of pressure.

A bunch of things are bothering me today. The most important was that my pet bird attacked me. The least important, is I didn't finish a pile of Sunday newspaper yet, and it's the middle of Monday. So of course I am typing away here, with the "task" of reading the papers to follow. Lazy for sure. Living with HIV is bigger than all this stuff put together, but I am used to HIV---we're not friends---but we're well acquainted.

You have done so many good things with yourself in the last period. You have been highly motivated and self-disciplined. Be proud.
You have reached out. You have people who love you. Cry if you must. The day you really enjoy again might not be that far off.  Hang in there. You've done admirable things. You'll do more I am sure.

 8) -megasept


 


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