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HIV Life >> I Just Tested Positive

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Reged: 07/30/13
Posts: 23
My fairy tale is a nightmare!
      #273208 - 07/30/13 02:57 AM

On June 24th my doctor called and told me to take my husband to the hospital immediately, his platelet count was non-existent and he was in danger of bleeding to death. They didn't know what was causing it or why he was dying before my eyes. Two days later they said it "could" be HIV. A week later they confirmed it. In all this time I watched my once powerful husband get weaker and weaker until he could no longer walk on his own. He was in the hospital for six weeks while we waited to see if the meds would help him regain his strength, he couldn't feed himself, he had to wear adult diapers, he didn't know where he was or what was happening. I was devastated, we had only been married three weeks when this all happened.

In the middle of this I was told that I, too, was HIV positive. I haven't sat down yet to think about what this means for me yet. I have been totally focused on getting my love the help he needs to come back to us. I've been trying to save our newly opened Karate school and keep us from losing our home.

My husband is slowly gaining his strength back, my mother lent me the money I needed to pay the bills, get our medications, and save the school for another month. I guess now I have to deal with what this all means. My doctor started me on Bactrim a week ago and I'm tolerating that fairly well. I just picked up my prescription for Stribild this afternoon, although I'm not going to start it until Friday when my husband is finally home. I saw what these meds did to him, the sleepwalking and night terrors, and I'm terrified of what they will do to me. I don't want to be alone in the house when I start.

I don't know what to think or how to feel. I don't want to be on medication for the rest of my life. I don't know how we are going to pay for these prescriptions every month. I want this nightmare to end and my life to get back to normal. I want to worry about whether we have enough students to make the rent, not whether our viral loads are too high or CD4 counts are too low. This isn't supposed to happen to us! We were supposed to live "happily ever after."

Where is my happily ever after?

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Reged: 10/25/10
Posts: 1131
Loc: GA, USA
Re: My fairy tale is a nightmare! new
      #273212 - 07/30/13 02:19 PM

I'm sorry to hear about your situation it's rough on everyone when they first find out. Work, home life, personal interactions all become strained for everyone who is infected. It's part of the grieving process.

First you need to find the time to take care of you. Can't really be there for your husband if you're suffering too. People live a very long time on par with other adults their age if they learn how to take care of themselves. So you can still have your fairy tale if you want.

First though may I suggest that you ask for a case worker that specializes or has dealt with HIV. They can help guide you to services that can help you such as a therapist and doctor. Talking this out with a trained professional now will help you feel better and provide you with the tools you need to take care of yourself. So that you can approach your other problems more clearly and rationally.

I am by no means diminishing the turmoil you are experiencing, it is devasting to find out, but with a little effort to take care of you will go a long way in getting things back to normal. I also suggest your husband do the same.

I wish you the best of luck and you can drop by and ask any questions you want. There are many here who are in the same boat you are and have found many positive ways of dealing with it.

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Reged: 12/25/11
Posts: 1895
Loc: Jersey Shore
Re: My fairy tale is a nightmare! new
      #273215 - 07/30/13 02:58 PM

My heart goes out to you and I can truly feel the pain and anguish your in right now. And I know it's hard to see the shore line when it feels like your boat has been tipped over. It's going to take many deep breaths on your part and the same with hubb. It's a rough way to start a married life together but this can make your marriage stronger. Just be there for each other . Help each other to take care of your health. You may not believe it now but this can and will get easier to deal with and accept once the waves settle down and your able to turn the boat back over. There are many wonderful caring folks here and much knowledge. Don't hesitake to talk to us , and that goes for hubby to as he feels better. Just hang on , the shoreline isn't as far as you think...

Look up to the Heavens for the answers to Lifes questions .

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Reged: 05/15/13
Posts: 488
Loc: Alberta, Canada
Re: My fairy tale is a nightmare! new
      #273222 - 07/31/13 03:20 AM

I always hear those magic words when something that is not "in the plan" happens ... "this isn't suppose to happen to us"! Are we now superhuman, X-Men whatever parallel one might want to create to symbolise these words. Well we are all just human and here on this spinning orb in space called earth.

I don't understand the sorrow and grief of HIV/AIDS, I never got the chance to experience that, it might be coming who knows. For those that do have this difficult horrible time with acceptance I feel for them, maybe it is life changing to a certain degree, I get that!

Ninja, your happily ever after is still there, your husband did not die, you did not die ... sure HIV has been tossed into the mix at what might be a very wrong time with the afterglow of a wedding and starting a business together, but it's there. Grieve, yell it out at the top of your lungs, but focus on healing ... healing the hurt and anguish regarding something that was not invited into your mix, but is there, forever. Get your husband up and running again, count the blessings that it was caught in time for him and he can be on a road to healthy again.

Sure HIV will change the game a little, especially for newly-weds, couples, even single people for that matter. Don't let it live your life for you though, let HIV come along on your journey. If it becomes just a couple pills everyday, that's great, maybe the occassional tired spell where it's hard to even get out of bed in the morning ... it's not being lazy, it's just HIV reminding you its there.

The karate school sounds like a fantastic thing, it might mean mentoring someone to become a new instructor for your business, maybe a manager of sorts and you just own and promote the business ... that's the fun of owning a business, your in more control over it than meets the eye. There is options, of course options that are somewhat blurred right now with what your going through.

Once you have settled into the HIV journey, it's there with you forever now, make it part of your life and then everything will come back together. Might not be a normal as you knew it but it can become a normal that you can make it!

So please reassess your "We were supposed to live happily ever after" and "where is my happily ever after?" ... like I said it's all around you, you still have each other, alive, and a family support system that sounds like very helpful. When you measure a persons life journey, the road ... this is just a little bump. Your happily ever after is just there waiting for you to make it, together!

anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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New User

Reged: 07/30/13
Posts: 23
Re: My fairy tale is a nightmare! new
      #273251 - 08/02/13 03:12 AM

Thanks everyone for the responses, I am feeling better and calmer. I've found that if I keep busy with projects designed to help us live with this I don't feel as panicked.

The good news is that my husband is coming home tomorrow! For the first time since this nightmare started he will be home and on the road to health. He still has a long way to go. He needs the help of a walker and I'm installing motion sensor alarms to keep him from sleepwalking out the front door.

I know the next few months won't be easy, but at least he will be home where I can do more to help him recover. Anyone who has ever tried to sleep in a hospital knows how impossible that is. He'll be able to get a good night's sleep again and so will I!

I did talk to the clinic and was given a case worker who is wonderful! She helped us get co-pay cards to help pay for the meds and is helping me wade through the government forms to get short term disability for my husband. If we can get that we might be able to save the business!

I have a lot of ideas floating through my head of things that I can do to turn this into a positive experience. The resources for families and patients in my area are sadly lacking. There isn't even a support group for family members to deal with their emotions. There are still people in this community that believe using the bathroom can transmit HIV. Change needs to happen here and my husband and I are just the ones to make that happen!

Well, tomorrow is a big day and I've got a lot to do before I bring my love home. Thanks again to everyone for the support and encouragement.

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