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Author Topic: Hello. I'm new to this life change!  (Read 5040 times)

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Offline Sprackdoll

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  • Posts: 12
Hello. I'm new to this life change!
« on: January 15, 2016, 12:50:55 am »
Hello ladies,

I was just diagnosed about 1.5 wk ago. I'm very new to this whole thing. Just had my first appointment with my new doctor and first blood drawing. And just broke up with my partner who just tested negative today. Still everything feels very unreal. Emotionally unstable... Almost feel like bipolar. One min I'm happy and optimistic as I can be. Then all the sudden tears coming out non-stop. I just thought talking w someone would help me understand more and help me ease my pain. My illness didn't bother me much when I found out. I get more bothered by how my partner just changed the way treated me. I felt like I was a total stranger to him. Ushhhh. So I would rather get rid of bad and awkward vibe I'd been feeling from him than feeling it every time I see him. Well I'm sure you ladies have a lot to tell me. I'm very excited to meet you.

Offline lioness

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  • Posts: 43
Re: Hello. I'm new to this life change!
« Reply #1 on: January 15, 2016, 04:55:40 am »
Hello sprackdoll,
Let me start by saying am sorry about your diagnosis and welcome to this forum. It's sad to hear that you broke up with your boyfriend. Yea, you come to know them better when in such situation. Nevertheless, it is okay to have those bad feelings.

 I will give you the same advice I was given when I got diagnosed last year in August, that give yourself time to release those feelings through crying. It is quiet okay to feel the way you do. As you do so, remember life has just began and need to be positive towards it. Can you see your back during the day? of course no, what about your front? What of during the night, can you still see your back and front? You need source of light to see your front and still you will never see your back still. So, forget about what happened before, don't even bother to keep figuring out where and when you got it coz it doesn't matter. what counts now is that you know and already taken necessary steps to live healthy normal life. This is the place to be to tap the light you really need at this dark moment. Many have walked this path and can only hang on to this board and your ID to educate yourself. sooner or later you realise its not as bad as it used to be years ago.

Wish you all the best

Offline lioness

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  • Posts: 43
Re: Hello. I'm new to this life change!
« Reply #2 on: January 15, 2016, 04:59:09 am »
Hello sprackdoll,
Let me start by saying am sorry about your diagnosis and welcome to this forum. It's sad to hear that you broke up with your boyfriend. Yea, you come to know them better when in such situation. Nevertheless, it is okay to have those bad feelings.

 I will give you the same advice I was given when I got diagnosed last year in August, that give yourself time to release those feelings through crying. It is quiet okay to feel the way you do. As you do so, remember life has just began and need to be positive towards it. Can you see your back during the day? of course no, what about your front? What of during the night, can you still see your back and front? You need source of light to see your front and still you will never see your back still. So, forget about what happened before, don't even bother to keep figuring out where and when you got it coz it doesn't matter. what counts now is that you know and already taken necessary steps to live healthy normal life. This is the place to be to tap the light you really need at this dark moment. Many have walked this path and can only hang on to this board and your ID to educate yourself. sooner or later you realise its not as bad as it used to be years ago.

Wish you all the best

Offline PittGurl

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  • Posts: 330
Re: Hello. I'm new to this life change!
« Reply #3 on: January 15, 2016, 09:44:24 pm »
Sprackdoll, sorry about your new DX - I am pretty new too :(  For me, the emotional  & mental part has been the hardest struggle. I actually had to start an antidepressant about 2 weeks ago.  Not an easy decision bc i am not a medication person.  These forums are great though....alot of support and ask any questions - there is sooooo much knowledge here.

I think everyone will agree - time is our biggest problem....i wanted to speed it up so i could feel fine and accept it - but truth is....you can't.  Let yourself cry, let yourself feel the hurt, betrayal and pain and anger.  But when your happy, really BE in that moment and enjoy it.  I truly understand where you are when you say you feel bipolar...i am still struggling with up and down emotions too. I'm now a single mom to my 2 kids and trying to deal with all the emotions of that and this DX and whatever else life is going to throw my way.

The best advise i can give you is to get a good support system to surround you.  People you trust, maybe a clinic that has counseling, these boards where you can just be a name behind a post, etc.  Just know you have somewhere to turn when you get down. We're here and we understand :)
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%
12/27/'18   CD4=841; VL=UD; 41%

Offline BT65

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Re: Hello. I'm new to this life change!
« Reply #4 on: January 19, 2016, 05:21:09 am »
Hi Sprackdoll,
Welcome to the ladies forum!  Sorry you have to use us, but I'm glad you found us. I totally get you feeling up and down, I did also.  I was diagnosed in 1989 (yep, that long ago) and I'm still around.  I went through a lot physically during the early days, but that was back before they had all these meds they treat people with now.  They only had a few and they really did not know how to prescribe them so those of us that took them had a lot of bad reactions.  Thank heavens the meds have changed and they know so much more than they did back then.

When I was diagnosed I was told to get a power of attorney, make out a will, and find someone who would be able to take care of my daughter (I was a single mother), because I wouldn't live past 1 or 2 years.  That was how it was back then.  We weren't given hope like nowadays when they tell people they will live long lives thanks to the meds.  We were all told we only had 1-2 years to live.  So, at least now there is more hope.

I have no idea why I survived when so many of my friends didn't. I did nothing different than they did, and I believe some of what figures into some of us living longer is genetics. But anyway, yeah, I lost many friends.  There was a time when I was going to a funeral or two every week.  And even now I have still lost friends to this disease but it's nothing like it was.  The meds have made a huge difference.

If I were you, and I don't know where you live, I would contact the nearest ASO (Aids service organization) and find out what services you can take advantage of. If you don't know where it is located ask your doctor's office (the doctor who is going to take care of the HIV).  They may have a support group you can take advantage of, they also can help you with how to pay for your meds if you don't have insurance that will cover them, and other programs that can help you.  I used to work at the ASO  in this area and we had a few different programs that assisted people, including getting people on special insurance that paid for doctor visits and meds, housing, a food pantry and limited financial assistance if someone was having a hard time paying like a utility bill.  There are also a couple support groups here, one exclusively for women.

Ask any questions you like, we're here to help you.  As far as your emotions, what you're experiencing is perfectly normal for being newly diagnosed.  Just give yourself time and be gentle with yourself.  And try to treat yourself now and then, it will help.  Hope to hear more!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf

http://www.aidsmeds.com/articles/Transmission_17146.shtml

Offline Sprackdoll

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  • Posts: 12
Re: Hello. I'm new to this life change!
« Reply #5 on: January 19, 2016, 02:53:02 pm »
Thank you for your advises. I have contacted Utah AIDS Foundation already and we plan to meet after my doctor figures out with my meds. I have been doing much better last couple days. Getting rid of toxic partners (ex- who got me into this life) and arranged work schedule so that I can attend support group. I'm sure there will be many more downs come my way. But I'm being optimistic. Thanks to meds. I'm not really worried about dying cus of this. I have more chance dying from car crush with my driving skill than this illness! Lol! Started back my work out routines and diet. Trying get back my muscle lbs I lost in last two months. It took me 11 months to gain and lost them in 1.5 months  >:(  >:(  >:( . I'm very excited about my lab result I will know this Thursday. It's like a test score.
I can't just  give up living for my kids. I can't let this illness make my life miserable.  I'm also a proud single mom with new opportunities. And love it!!

Offline Sprackdoll

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  • Posts: 12
Re: Hello. I'm new to this life change!
« Reply #6 on: January 19, 2016, 03:07:03 pm »
One more thing... How did you tell your kids. If you did, how old were they? I'm hesitant to tell them. My daughter is old enough to be okay. But my son is 13... Too much hormone to deal with this??

Offline BT65

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Re: Hello. I'm new to this life change!
« Reply #7 on: January 19, 2016, 03:33:05 pm »
Back when I was diagnosed, my husband died within two days of my diagnosis, so I had to tell our daughter that her father died.  She was 4.  After that, I started meeting all sorts of HIV+ people and all we had were each other.  Especially when I went through the wasting syndrome and ended up on disability. All my friends were on disability due to being so ill, so we clung to each other, and my daughter was around them also.  In fact, one of my very best friends who had AIDS was a single mother with daughters around my daughter's age and they used to spend nights at each of our houses. 

I did tell my daughter, and because of the nature of the disease at that time (almost everyone was dying) she went with me to say good-byes to friends, who were also her friends. She went on AIDS walks with me, attended potlucks and picnics that were put on by the activism group I was with etc. 

When I got sick, and I had the wasting syndrome, I got down to 80 lbs, and I was 5'10".  I say "was" because of osteoporosis I've lost 4 inches.  But anyway, I had Hospice care, wasn't expected to live beyond a month.  My daughter had to stay with my brother and sister-in-law because I was so sick I couldn't take care of her. But she did understand what was going on.  And for some unknown reason I did live (duh).  And she came back to live with me. 

Because of the diverse group of people she met she is one of the most open minded persons there is.  She's half Hispanic herself, and she has been around all races, gay/lesbian people (I am bisexual and was once in a committed relationship with a woman), trans, different religions etc. 

How did I tell her? I told her straight up what HIV/AIDS is, the difference between the two, and what could be expected at that time in the early years of the disease.  I told her how and how not to become infected.  I told her to treat everyone she met with HIV/AIDS with respect and empathy. 

Kids understand more than we give them credit for.  If you're unsure about telling either of your kids, talk to the ASO.  Sometimes they have pamphlets about telling kids.  Or case managers may be able to offer words of advice.  Sorry this is so long, but I just wanted to make sure you knew the story.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf

http://www.aidsmeds.com/articles/Transmission_17146.shtml

Offline PittGurl

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  • Posts: 330
Re: Hello. I'm new to this life change!
« Reply #8 on: January 19, 2016, 05:35:56 pm »
Betty you are just amazing!!!  I am going to be sure to draw some of your strength when the time comes to talk to my 12 yr old son. My 17 year old know but i just can't tell my son yet.

I really think you should write a book- you have so much hope to offer people!
Infected between 5/16/15 - 7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Positive Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on this board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 months on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 months on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/2018   CD4=893; VL=UD; 39%
8/9/2018   CD4=858; VL=UD; 41%
12/27/'18   CD4=841; VL=UD; 41%

Offline Sprackdoll

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  • Posts: 12
Re: Hello. I'm new to this life change!
« Reply #9 on: January 19, 2016, 06:02:53 pm »
Thank you Betty. Yes, you should write a book. You have had such an interesting life. My kids are exposed to many type of people. My daughter is a lesbian and we have my future daughter in law living with us for last 3 years. So I feel okay to tell girls about my situation. I think I will just wait to tell my son until his hormone settles down and all the teenage dramas are done. Plus I don't want to give my ex any reason to believe I am not capable to taking care of him. Jeesh men!

Offline Sprackdoll

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  • Posts: 12
Re: Hello. I'm new to this life change!
« Reply #10 on: January 24, 2016, 01:39:28 pm »
I got my number last Thursday CD4 327 VL 13650. Went to do more blood work (oh man that was annoying again) for geno type test n such. I have appointment with my doctor in two week. Hopefully she can give me some options for meds. Meanwhile went to talk to Aids foundation here in town. They offered me comfort and knowledge that I needed. Also will be helping me with plan for meds expense and such. It is true it gets easier to deal emotionally after while. Thanks for your advice and support :)

Offline BT65

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  • Posts: 10,785
Re: Hello. I'm new to this life change!
« Reply #11 on: January 25, 2016, 06:02:17 am »
Glad you had the genotype done so your doctor will be able to get you on a good regimen for getting your immune system back under good control.  And I'm so glad you're working with the ASO for support and to help you get assistance with paying for meds. Please continue to update us on how things are going, which med regimen you will be starting, and how things go after you start.  We will be here to offer support!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf

http://www.aidsmeds.com/articles/Transmission_17146.shtml

Offline lupetto

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  • Posts: 70
Re: Hello. I'm new to this life change!
« Reply #12 on: January 27, 2016, 05:09:55 pm »
Hey Sprackdoll!
I'm so impressed by your optimism and attitude. And glad to hear you have been so active and have already organised support around you. I have a strong feeling you'll be dealing just fine with all this! And you're not alone. I'm sorry to hear about your break-up. It's tough and hurtful when in the middle of a turmoil you can't lean on someone you thought you could.

PittGurl and lioness gave great advice: give yourself time and let yourself feel whatever it is you're feeling. I know it's not that easy, I guess we all like to hurry things and feel OK soon again but you can't really speed it up. I've been given the same advice so many times as well that I've had to start believing it. ;D

Betty, thanks for sharing your and your daughter's story. She must be quite a young lady being raised by someone so strong and emphatic as you. Your words are always so empowering and inspiring - you've dealt with so much but you never give up. I respect your courage and honesty - something I'll try to embrace too.

Offline BT65

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Re: Hello. I'm new to this life change!
« Reply #13 on: January 27, 2016, 06:22:32 pm »
Lupetto thanks for your kind words.  There has been a lot of mountains, take my word for it.  Luckily I've been able to get over them. But it's only because I have pretty good support.  Not a lot of people, but strong ones.  That includes you all. We are all tough!!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf

http://www.aidsmeds.com/articles/Transmission_17146.shtml

Offline Sprackdoll

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  • Posts: 12
Re: Hello. I'm new to this life change!
« Reply #14 on: March 05, 2016, 08:05:17 pm »
Life is so interesting. When you try to hurry thing to put back in normal, there is always something. My blood test went MIA for 3 weeks!!!! Hoi that was so annoying and frustrating. No one knew where it was or what happened. Anyway my doc finally received the result Tuesday and called me to let me know she was going to put order to a local pharmacy where they normally have HIV meds. Then ins didn't go thru.. Thanks to United Health, they only cover specialty meds thru OptumRX mail order. After dealing 3 hours with them, this nice rep overwrote my order to be able to pick up from local pharmacy. So now I'm on day 2 w my cocktails. Pretty blue Truvada and yellow Tivicay. No major side effect beside on my first day my work place smelled like mixture of BO, farts, onions, and something sour. Ewwww. I heard there isn't much side effect with new meds. Any opinion? Ive been training for my races in this summer and I was advised to take it easy by someone w HIV. He said I would lose lots of fat, muscle. Does this happen to any of you? And I started getting allergic reaction to eyelash extension after I got this illness. So sad I can't wear them any longer. Hopefully when my CD 4 goes up, I might be able to go back to using them again.
« Last Edit: March 05, 2016, 08:14:08 pm by Sprackdoll »

Offline Sprackdoll

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Re: Hello. I'm new to this life change!
« Reply #15 on: March 16, 2016, 11:24:17 pm »
Here is some update. Good and bad.. Meds Truvada and Tivicay I was taking caused me to break out rashes!! So my doc told me to stop. I was on them only for a week before I couldn't bear scratching myself to bleed. Now it's been 5 days and rashes are fading away. We will figure out new cocktail for me after my blood test result comes back. So that's a bad. But I contacted UAF and signed up for volunteering at the location. I have an orientation 4/1. I am so excited to get involved and contribute for a good cause. Women with HIV in Utah are so small. Our support group is very small comparing with other states. I believe and I know me coming out of my fear and face with challenge will be good for me. Also helping out others who are in the same shoes or helping comforting woman with fear to take HIV test will be good for me. So just wanted to update my life here.

Offline BT65

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Re: Hello. I'm new to this life change!
« Reply #16 on: March 17, 2016, 08:39:39 am »
Hi Sprack!

So sorry to hear about your allergic reaction to your meds.  Don't give up, there are certainly more combos you can try!

About losing fat and muscle...I do not agree with your friend.  If you had the wasting syndrome you would lose fat and muscle, but not otherwise.  I mean, if you exercise you may lose fat but that's not a bad thing (at least not to me lol).  But just a word of advice...I would not try to do the long distance running until after you start on your new meds, whenever your doctor figures out another combination for you.  It may just make you unusually tired.  But, when things are better, it's definitely a good idea for HIV+ people to exercise.  I try to do it when I'm able.

I think it's wonderful you're going to volunteer.  I know it's personally rewarding and I'm sure you'll love it.  Keep us updated on how things are going!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf

http://www.aidsmeds.com/articles/Transmission_17146.shtml

 


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