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Author Topic: What is the biggest personal challenge you face regarding your hiv status?  (Read 18171 times)

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Offline minatl

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #100 on: January 04, 2014, 08:04:55 PM »
I have spent my entire twenty years with HIV in Atlanta and hae managed to receive pretty adequate care, even during the slurry of misinformation that comprised the late 90s and early 00's. Might I ask where you are getting care?

jkinatl2--Wondering where you get care in Atlanta?  Several of us Atlantans here, and I'm new to town and newly diagnosed.  Not too crazy with my care so far....
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Battle4Hope

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #101 on: January 18, 2014, 11:51:31 AM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

Online Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #102 on: January 18, 2014, 11:56:18 AM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

Maybe they can make gummy antivirals to make them fun to take . Sponge Bob would never make us sad at pill time .

I think we have room to reasonably expect a once a week or month therapy in the coming years . 

Offline Battle4Hope

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #103 on: January 18, 2014, 12:48:49 PM »
haha....ya u are rite@jeff,'anti viral chewing gum', LOL ;D....hey,thanx huh,u blew my worries for time being........lets hope for sum innovative medication !!!!!

Online Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #104 on: January 18, 2014, 12:53:58 PM »
haha....ya u are rite@jeff,'anti viral chewing gum', LOL ;D....hey,thanx huh,u blew my worries for time being........lets hope for sum innovative medication !!!!!

I do think some better treatment options will come our way but until then a good laugh every now and then is powerful medicine as well . 

Online leatherman

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #105 on: January 18, 2014, 01:09:12 PM »
I would be remiss to not mention something first before posting some good news, Battle. First off, many many people take daily medications. It's actually the blessing of medications. In the early 1900s people were mostly dying by 40, today the avg life span is near 80-something. A large part of that is because people (poz and neg, old and young) take daily meds and fight off death daily. ;)

Secondly, I remember the days of taking 32 pills a day to keep the HIV at bay. Now I take 5 and think it's a blessing! But news out just this year talked about upcoming meds that may be once-a-month injections or maybe even once-evert-THREE-months injections. That's pretty spectacular!

Quote
This year, we learned much about a couple of "long-acting antiretroviral" candidates in the works. Most notable among these is GSK1265744 -- which, although it may need to be injected, is being engineered so that it only has to be taken once every four weeks at the most.

Early clinical trials involving these drugs have shown promising results. Now, to be sure, it's not a guarantee they'll work out, and many months of study lie ahead before we can even begin to entertain the idea that they'll become a part of regular HIV care. But it sure is an exciting concept to consider, all the more because it may be achievable.
http://www.thebody.com/content/73500/10-moments-that-changed-hiv-care-this-year.html?getPage=5

Just keep saying to yourself that the meds (and google LOL) are your friends. Thanks to the power of positive reinforcement (saying that mantra, taking your meds, and living another day) one day you may start to really feel that way too ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline CybertronEra3

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #106 on: January 21, 2014, 03:02:13 PM »
For me it's only been almost 7 months and I feel that the biggest hurdles are my lack of motivation, the self-imposed isolation, my constant irritability that just kills any chance for intimacy and navigating my role in life. Also the stress of keeping mum on my status from family members and longtime friends. I know one day I will disclose my status but until I reach certain physical health goals and an undetectable status that will not happen any time soon. The lack of motivation is my biggest challenge. I feel once I break through the rest will be quickly resolved. Before my new status I always considered myself a very self-aware individual but recently it's hard to look at aspects of life without the flash of the word P O I N T L E S S dominating my internal narrative. I know Im just in a bit of a haze and it will pass but till then it's a mental battle coupled with the one happening in my body. I'm a self professed secular humanist, and am determined to leave this world a better place then what it was when I was birthed into it. I feel my proverbial clock ticking away when left to my own devices.  Then there's also a maddening "fuck it" mind frame that leads to a call for anarchy. Alas this cosmic struggle will be played out by my choices alone and hope I can accomplish everything I can before I check out.

Offline darryaz

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #107 on: January 21, 2014, 05:04:01 PM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

A 90-something friend of my Mom's told me once that she LOVES her pills.  She is the only person in her family who lived beyond their 50's.  She completely attributes her longevity to the PILLS she takes every day.

So in the "big picture" taking a few pills each day may not be so bad :)

Offline Joe K

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #108 on: January 23, 2014, 04:34:07 PM »
My biggest challenge is to decide what to do with my life, now that I am single.  In March, I will have lived with HIV for 30 years.  In June, I will become 60 years old.  I have lived as much of my life poz, as negative and I simply can no longer remember the feeling of not being HIV positive.  I have been involved with the HIV community, in some capacity for 28 of those 30 years.

I have lived at least two decades longer, than anyone told me I could, when I became poz and some days, I feel I am long past my expiration date.  I have battled depression all my life and combined with the damage from HIV and medications, I am in a body that is old and frail, decades before it should be so.

I no longer fear death and in some ways, will welcome it, simply to stop the hurt and heartbreak.  So many of my dreams were crushed when I became poz and while I have no regrets, I resent what has been taken from me.  Yet, I still question why I survived, when all of my friends did not?  I got to live, but I was left alone.  I was lucky, I am told, but many times I am not so sure.

HIV did not just damage me personally, it took away the only world I knew and left me to fend as a stranger in a strange land.  It killed my friends and each and every death is permanently etched upon my being.  I remain numb from the loss and feel it every day, when I look around and find myself and few others, left from those terrible times.

Just to be clear, I am doing fine and writing these words, helps me to clarify what my "real" issues happen to be, as well as sharing my experience, of which many others on these forum share.

I assume this is my "mid-life" crisis, but no flashy cars for my birthday.  Instead, I will step back and pause, to reflect on my utter good fortune in life and then figure out what I want to do for a "second act."

I do this, not only for myself, but for those I have lost, the ghosts in my mind, as I will never stop mourning their loss...  nor shed the feeling of abandonment. 

Nobody did it to me intentionally, but it still happened.

Joe
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Offline Ann

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #109 on: January 24, 2014, 07:19:18 AM »
Thank you for sharing that with us, Joe. I know it wasn't easy.

((((((((Joe))))))))

Love you buddy. We're all here for you.

Ann
xxx
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

Online Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #110 on: January 24, 2014, 08:08:41 AM »
Thank you for sharing that with us . Hugs .

Offline RiderMan

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #111 on: January 29, 2014, 10:07:24 AM »
Hi everyone.  Good to read this email string, insightful and therapeutic for me.  I was diagnosed fall 2012 and no meds yet. My personal challenges are the same as when I found out cuz I am not being proactive to address them:

1) Disclosure to family - I did reach out to my dad and afterwards my sister, both were supportive however have not told my mom. She would be broken and I do not want to see her depressed (she is already battling this)

2) Every day without fail I think what an idiot I was. My brother died of AIDS in the mid 90s, I remember taking him to the hospital for a strange skin rash, asked the doc to do a blood test. I saw 1st hand what someone goes through, but I still put myself in a risky situation (unreal!)

3) I have a daugther who is 5, I know that one day I will need to tell her and it really worries me.  I love her so much and I worry that she will see me differently

4) I actually reached out to the person that I contracted HIV from, she recently said she stopped meds and will go with experimental meds, she does not trust her doctor; I am pressuring her to seek a new doctor but does not appear interested. From reading many posts I only see that meds are the true solution and not detoxification, vitamins etc (but I could be wrong)

5) starting meds; I had 2 doctors evalatuate my situation and both recommended different meds, this concerned me.
08-27-2012: contracted
10-17-2012: Positive
10-17-2012: CD4 - 555  VL 7700
11-06-2012: CD4 - 595  VL 20000

Online zach

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #112 on: January 29, 2014, 12:58:40 PM »
loneliness, nothing else has even come close. it hurts

regrets, for a period in my life when I went out of control, high risk behaviors, and now i'm paying the price

stigma, I've learned to not only live with that, but challenge people about it. but losing so many lifelong friends with little fanfare really hurts

being totally poz outed in the small town where i'm from, everyone knows. tim knows where i'm from, i'm sure he can understand that

but what really killed me, my youngest son sat in class and listened to kids making fun of hiv/aids.... I've never in my life felt so ashamed as when he cried telling me that story

edited to add: and falling so completely apart when I was diagnosed. even without that little tid bit, I was already under incredible stress, I had worked really hard to build a life and felt like I was right on the edge. then the AIDS thing. and I shattered and broke, and lost everything i'd achieved. now I don't know how or if I can ever put it back together again. and I feel lost
« Last Edit: January 29, 2014, 01:15:57 PM by zach »
3/27/14 vl >300k cd4=9... plenty of room to improve

Many rivers to cross
But I can't seem to find my way over
Wandering I am lost
Yes, I've got many rivers to cross
And I merely survive because of my will...

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #113 on: January 29, 2014, 01:00:37 PM »
but what really killed me, my youngest son sat in class and listened to kids making fun of hiv/aids.... I've never in my life felt so ashamed as when he cried telling me that story


Ouch.
AIDS isn't for sissies.

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #114 on: January 29, 2014, 01:10:08 PM »
jkinatl2--Wondering where you get care in Atlanta?  Several of us Atlantans here, and I'm new to town and newly diagnosed.  Not too crazy with my care so far....

I am in the ATL area, and I get treatment at the Grady IDP.  Now many would gripe about this, but overall my care has been downright decent.  And I have to say that the doctor I have now KICKS ASS.  He has twice now taken the time to call me at home to check up on me.  Once when my collar bone  was broken, and now when there was a potential blip/maybe more situation going on.  He has also given me email access to contact him with questions or concerns at any point in time.  I didn't get that good of care when I was under the usual insurance frame.

Now...as for the question, I sort of share an answer with Joe:  I have zero idea what to do with my life.  That's just being honest.  Put bluntly:  I was raised in a very evangelical environment and taught to expect the end of the world long before I would ever see gray hairs.  Then despair over my personal truth versus the fantasy world I was raised in led me to essentially try to take myself out passively.  Well...long story short, I pulled through all that and have come around to being a bit more fond of myself these days.  And yet...I find myself here at 43 without a clue as to what I "want to be when I grow up".  My collection of health issues keeps me uncertain about what kind and how much work I can do, but the biggest factor is that I am facing a future I never expected to have - for two different reasons.

That's it.  That's me in all my humbling truth.
AIDS isn't for sissies.

Offline SouthSam7

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #115 on: January 29, 2014, 01:50:16 PM »
After two years in Atlanta, I moved back to Birmingham. The uninsured care in Atlanta was atrocious. I thought I could literally die so I had to leave.

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #116 on: January 29, 2014, 07:38:02 PM »
After two years in Atlanta, I moved back to Birmingham. The uninsured care in Atlanta was atrocious. I thought I could literally die so I had to leave.

Don't know how you and I managed to have such drastically different outcomes in the very same system in the very same city.

While I agree that there are significant problems with regard to how the state handles ADAP, I remain skeptical that Alabama would be some land of milk & honey in comparison.  Seriously?

AIDS isn't for sissies.

Offline hivtalian

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #117 on: February 02, 2014, 11:43:00 AM »
Joe reading your post made me really emotional.
I've jut been diagnosed, not even 2months, and I'm 40.

And reading what you said about all your friends gone made me think about how things have changed in last years and how "lucky" all the newbies like me are, living in an era when hiv is not anymore the monster it was in the past.

It's also thanks to stories like yours, that "new" people like me can hope in a better future and can jump over all the depression that comes just after the diagnosis...

I guess from what you wrote that you had a life full of love of all those friends gone, who will stay inside you, and now they're there with you helping me, and all the people like us, to go on and fight.

I've been thinking "life is gonna be a shit", "it's all gone", "game over", I?ve been also thinking of suicide not even 2 months ago, but thanks to people like you, some friends here and a great doctor I really trust on, who gave me my pills straight ahead for treating my acute infection, Im' feeling pretty good and I'm very ...positive toward my future.

My biggest challenge concerning being positive?
It's not about death now, I know we have quite a good life expectancy.
It's not about pills, I know they're and they're gonna be my best friends forever , and I'm happy to swallow.
It's about, I must confess, my sexual life. I'm still feared to have sexual intercourse and I have to fight the automatic thought "I'm poisonous".
I'm feared to figure out how to behave with my sexual partners (telling or not my status?) and to do even safe sex (oral sex without condom is a big concern, but ...thank you Ann for your great advices...!).

But all I can say is that every day is getting better, and one month ago I'd never have thought I could be so "quite good" after just few weeks.

My pills work, no acute side effects so far and values are great (cd4 922 and VL 1024, starting from cd4 716 and >500000 end of december 2013).

So thank you all, thank you Joe for sharing (go on, life's worth living every day, and I'm sure you've reached that interior melancholic smile typical of wise people which is a gift for everybody), thank you Ann, and thank you research for giving us the chance to fight, and who knows, maybe, to win, battle after battle, this war.

Offline Cenlaguy

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #118 on: February 20, 2014, 10:07:26 PM »
My biggest problem is dealing with this hiv rash that appears on my face. It's driving me crazy and idk what to do. I have been out of work for almost two weeks now. I have tried cortisone creams. Didt work. I have never had acne so this is very embarrassing. I don't even leave my house it's so bad. I went to my person doc yesterday and he have me a cortisone shot. I hope this helps. Does anyone know how I can make this go away? I just started my meds about 3 weeks ago as I was just notified I am hiv pos. I am taking stribild. My cd4 count was 314 and vl was 274,000 before starting meds. I don't go back for another lab work until next month. Someone please help if you have been through this situation. Thanks.

Online Almost2late

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Hi Everybody,

My biggest challenge was back at the end of January when I had PCP in the ER and stayed in the hospital with this brand new (to me) diagnoses. Thought of suicide constantly back then but I also thought of my family and what that would do to them, So I kind of got over it, sought of.. Now it's a few challenges that go hand in hand, I gotta go to work, I got KS and no one at work knows about it but they kinda know something is wrong.. I just tell people to mind their own business and they get pissed. Sometimes I get up in the morning and think to myself "fuck it, I'm not going" but I still manage to go in.. I could handle taking the pills, just don't know if I can continue going to work and getting OI or cancer and not telling people.. need these fuckin CD4's up so maybe I can get on with my life! >:(
Diagnosed 01-27-2014,  MEDS=Atripla, Bactrim
02-01-14  CD4=13   VL=228,540
02-11-14  CD4=20   VL=16,041
03-13-14  CD4=52   VL=2,924
03-14-14  CD4=55   VL=1,900
04-02-14  not done  VL=1,918 WTF

Online Almost2late

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It's almost Friday and Sunday I'm going to the AIDS walk so cheer up dude 8)
Diagnosed 01-27-2014,  MEDS=Atripla, Bactrim
02-01-14  CD4=13   VL=228,540
02-11-14  CD4=20   VL=16,041
03-13-14  CD4=52   VL=2,924
03-14-14  CD4=55   VL=1,900
04-02-14  not done  VL=1,918 WTF

Offline hope_for_a_cure

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I suppose reacting to the initial shock at diagnosis should be my 'biggest personal challenge' with regards to my HIV status.  It is not however.  The week I was diagnosed was really suppose to just be a trip down to see my mom and attend her 80th birthday party.  The problem was that I was so sick upon arrival that I was not able to do much more than stay in bed.  A quick trip to a doctor here landed me in the hospital for tests... no need to go into details as they are not germane to where I am heading with this.  I found out I had full blow AIDS.

OK... the first big challenge for me once I was able to breath w/o my oxygen concentrator again would really be the adjustment to this whole new lifestyle.  Additionally, the stress related to obtaining health care and meds on top of my relocation to SC proved to be a challenge.  My period of financial hardship ended up being a double edged sword actually.  I immediately qualified for ATRIPLA's Patient Assistance Program and MIAP status which took care of the $44,000.00 hospital room charge.  You have to be pretty destitute for that to happen and I was in that category at the time.  On the other hand I had to sell my home in Maryland (very very little profit) and close out that part of my life for good.   

The soul searching that I went through and redefinition period changed me the most.  My initial application for Social Security Disability was approved and thank goodness I had some good employment in my past that allows me a decent monthly amount.  Challenges such as rebuilding a life while living with family, starting over and regaining financial security from nothing, trying to get my 'effin' CD4 count to stay above 200 would be my biggest challenge actually.  I am basically pretty upbeat and the whole AIDS thing and now Cancer (lymphoma) thing have not done me in yet. 

I miss my old lifestyle living in the home I own, dating, traveling, etc. from time to time but realize that I am needed here as a caregiver for my elderly mom who would be in assisted living otherwise.  I truly am at peace for the most part... very rare for me to get depressed and honestly I could see where folks would.  Its just not in my chemistry for some reason.  Don't get me wrong, I have my days when it seems 'heavy' but those are not frequent.  Support from friends and family in my case is amazing.  A simplified life has actually done me good now that I think about it... by that I mean... living in a small town with family and no longer being stressed over keeping up a 100+ year old house that was way too big for me to begin with. 

Sorry... don't usually vent here like this.  Good thread.  Just a bit of insight for some of you who do not know me here.  I have met many of you and consider you to be friends for life!  Hope to meet others when I can make it to an AMG again. 

Best to all!

James

Online drewm

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At this point, 4 years into this, the biggest challenge is keeping up with the required paperwork to maintain eligibility for medication assistance etc. Not to sound smug, because I certainly don't mean to, but some days I don't even think about having AIDS. At this point in my life, it's a nuisance but little else.
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Offline mitch777

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James and Drew,

Thanks for the posts. I can relate to them both.

Mark
31 years hiv+ (oct. 2013) with a curtsy.

Offline ratcat

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     The biggest challenge for me is the fact that I decided to pay for all of my care out of pocket, and in order to do this, I live in Thailand, where I was infected.  I miss my family and the USA but I do understand that life in the States is much more complicated and expensive and that there is little freedom there anymore.  I don't miss paying taxes, high rent and looking at the rear view mirror every 10 seconds when I'm driving.  Taking a pill every day is not a big deal, but traveling for an extended period of time would be and is difficult because It's not easy to get my hands onto more than a six month supply of meds.  So, basically I am trapped in a foreign country, working a fun but not high paying job.  HIV has forced me to plan more....and has stopped me from making any big plans!  I hope that this makes sense.   

 


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