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Anonymous
Unregistered

My story
      #133093 - 01/20/05 12:43 AM

My life, like many of yours, is fairly complicated. My husband was diagnosed as positive back when our daughter was just under a year old. It was a "rule out" sort of thing when he got sick and landed in the hospital. I was then diagnosed, and our daughter, thankfully, is free from the disease.

We are now nearly 11 years later. He's not worked in 10 years, so I have been sole provider for us. Lately, he's had more bad days than good, and it scares me. We keep our hopes up and try to deal the best we can.

Last year, my blood work was good enough where the doctor decided I could have a "drug holiday". Here we are a little over a year, and I'm still on "holiday". However, my latest blood work came back where my TCells dropped 200 points within 3 months, and I haven't had any colds or anything. Only thing was bothering me around that time was I got Bells Palsy, which could have been a trigger in the drop.

With that announcement, doc says he wants me to take Fuzeon, as well as the usuals, and even enter a trial they have going. I have lipodystophy in the abdomen, shoulders, upper arms and upper back. Lord knows I don't want it to worsen. Yay for meds.

After seeing my husband take Fuzeon, I feel so totally against even considering it, that I don't know what to do. My husband endured painful injection sites (he has no fat on his body) and the fact that he just got tired of sticking himself so much.

I have requested another blood workup, and some time to think about the Fuzeon as well as the trial.

I have done nothing but cry and dread the thought of doing this, it's so uncharacteristic of me. I am the one who is strong enough to not show my worry or feelings when it counts. But now, I'm a basket case and need distractions to keep my mind off things.

I don't have anyone in my life (other than the hubby) I can talk to about what I'm going through. I'm too scared to let people at work know I'm positive, because I don't want it to inhibit my advancement possibilities.

Unbelievably scared.

Thanks for taking the time to read this.

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Anonymous
Unregistered

Re: My story new
      #133116 - 01/20/05 09:03 AM

I know what you mean by not wanting to tell any one. This disease is frustrating. Hopefully you will have better luck with the meds then your husband. Have you looked around for any support groups in your area. That might help you.

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Anonymous
Unregistered

Re: My story new
      #133137 - 01/20/05 05:22 PM

why fuzeon? Are you resistant to all the other medications?

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Anonymous
Unregistered

Re: My story new
      #133335 - 01/21/05 07:01 AM

Doc says I'm resistant to many, and he wants to give me the best combination available.

With respect to support groups, well, there aren't that many in my neck of the woods that is either close to my home, or in a decent enough neighborhood that I wouldn't be scared to go to.

I dunno. I guess I have some time over the weekend to think about things. I try to base my decisions on what is not only best for me, but for my daughter as well. I think that's why things are so hard on me.

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Anonymous
Unregistered

Re: My story new
      #133395 - 01/23/05 01:13 PM

Fuzeon is drug of last resort. If you are still have drugs available, see another HIV specialist, Perhaps he or she can put together a regimen that is still active.

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positively
Newbie

Reged: 01/20/05
Posts: 3
Loc: NE USA
Re: My story new
      #133410 - 01/23/05 08:58 PM

I can understand your fear. You have a lot going on.

Why is the fuzeon necessary?

Hang in there. Talk to your doctor and tell of your fears and not wanting to go on that med, find out all the options.

Thank you for sharing your story. You helped me make up my mind. I was going to ask about a drug holiday at my next appt. but now I think "if it aint' broke, don't try to fix it."

Definitely don't tell anyone at work.

I'll keep you in my prayers.
Please fill us in on your progress.

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Anonymous
Unregistered

Re: My story new
      #133421 - 01/24/05 06:57 AM

Thank you, positively, your words are very encouraging to me. I'm still not 100% sure why the Fuzeon. He tells me to bang out a year's worth of higher T-cell counts and lower (undetectable) VL (mine is currently under 9k). Also, the Fuzeon seems to work well with the trial he wants me to enter. It would be my first trial if I decide to do it.

Frankly, I feel almost as if the bad news was handed to me all over again. But I'm starting to feel better emotionally, since last week. I guess that will only last until I talk to him again this week.

With respect to a drug holiday, it's been wonderful that I haven't had to take all the meds. I absolutely loved it, after taking meds for nearly 10 years then. My CD4 and VL have always been better than "normal", so it's been great to have that option. Hardest part is the time where the doc says it's time to go back on meds. That, to me, was hard. I think mostly because prescriptions are so expensive and I have to find some kind of assistance with paying copays and such.

Good luck, positively, I do hope your holiday request goes the way you want. In the meantime, I will keep my chin up :)

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Anonymous
Unregistered

Re: My story new
      #133477 - 01/24/05 07:07 PM

if you want to talk to other women living with HIV, call this number 1.800.554.4876
it's a group in Los Angeles called women alive and they have this free hotline.

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Anonymous
Unregistered

Re: My story new
      #133591 - 01/26/05 08:54 PM

hello,

I am new to this. I am thankful to hear that you and your husband are living with this for 11 years.

You need to follow your gut. there are so many other medications that you could possibly take.

You need to be straight forward with your doctor.
( I know that can be hard. You feel they have your life in thier hands and you dont want to disappoint)

Remember you life is in your hands.

You are not alone. We are praying for you and your family.

Crying is good. get it out and then get to work about finding as much info. that you can on the drugs that they want you to take.

love!!!!

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Anonymous
Unregistered

Re: My story new
      #133612 - 01/27/05 09:21 AM

I've had the disease since '92. I've been on several holidays. I love the holidays it gives me a chance to save money and feel normal. My copays are 70 a pop. The holidays only last for about 5 months. It gives my body a chance to heal it's self due to the harsh effects of the drugs. My husband is neg and I divorced him due to his denial of the disease. He would not listen to my fears or go to the doctor with me. Some husband huh? So now I am on my own and have all new fears. I am currently on holiday. Yeah! There are new drugs coming available all the time. I have a very honest relationship with my doctor, he knows all my fears, hopes and goals. That's important. But what gets me thru this life is that God is on my side and when this life is over, a greater life awaits. My Lutheran worship is what keeps me sane. Not until last year have I accepted death knocking on my door. Finally I got brave and open the door. Now I am not afraid anymore.
God's blessings to you.

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Anonymous
Unregistered

Re: My story new
      #133615 - 01/27/05 10:39 AM

yes all of this can really be scary. I too have been ositive for a number of years. I or should i say we (me and the husband) found out on his birthday in 1996. Some present huh? at any rate, like someone else said...you are in control of your life. my suggestion is to pray and ask God what he would have you do. that is what I am doing at present. I have a lump in my right lymph node that I must have an ultrasound done on so I'm scared too. But God is a good God. Stay upbeat and in God's word. Blessings to you and yours.

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fuzeonhelp
Unregistered

Re: My story new
      #133623 - 01/27/05 11:24 AM

Hi. I would like to give you a little background info before I address the Fuzeon issue. I am also a young married woman living with HIV. I was diagnosed in 1997. I had a boyfriend in high school that had contracted HIV through blood products as a child and was in total denial that he had it. He didn't tell me he was positive until we had been together for 6 years. His family was in denial as well and never encouraged him to talk about it or deal with it. He never even took meds until I was diagnosed and encouraged him to do so. He was never sick either. I had no idea he was positive. It took me a while, but I have totally forgiven him. I met my husband, who is negative, a few months after our realtionship had ended (to which had nothing to do with the HIV). My awesome husband accepted me with all my "baggage" and married me several months later. God bless him for that. I am so very grateful and blessed. I have been on several combos of meds and I currently take Fuzeon. I have to say that it has been very well tolerated with me. I had a viral load of 70,423 and a CD4 count of 261. In two weeks my viral load dropped to 8,640, and in one month it dropped to 509. Two months later I was undetectable. I have had lots of allergic reactions to HIV meds and lots of resistance. At the time they were not sure if I was going to have a combo to take. I have to say that I am so glad that I went on Fuzeon. The benefits of the drug far outweigh the bad. There are different techniques that you can use to make the site reactions minimal. Such as, going into the skin at a 45 degree angle, warm compresses, massaging the site after the injection and so on. If you would like to talk about Fuzeon, or anything else related to HIV you can email me at Fuzeonhelp@aol.com. I will be happy to answer any questions that you have to the best of my ability. I am not a healthcare professional or anything and any questions related to your health and wellness should be directed to your Doctor or Nurse. I have just been taking it for 18 months. I have to agree with everyone else in saying that you should be totally honest with your Doc and let him/her know all your concerns so neither of you have any surprises. I have learned that it is so important to have a close relationship with your Doctors. The more they get to know your concerns and fears the better the care you will receive. I also agree that you should not tell your co-workers. I did that and it backfired. I told my boss because I was sick a lot and it quickly spead through the office. I could see the whispering and the dirty looks. It sucked. Please do not get discouraged. I beleive that God has a plan for all of us and there is a reason that we have this dreaded disease. Maybe it is to help each other. I am trying to help other women and men with HIV to not lose hope. God is good and He always has the last word! Not the Doctors! God can heal. God is with you. Please, please do not lose hope. You CAN and WILL get through this. God Bless!

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IzPoZ
Guardian

Reged: 01/24/05
Posts: 398
Loc: FTL, Florida
Re: My story new
      #133682 - 01/28/05 01:01 AM

Thanks very much. As an update, my 2nd bloodwork came back a bit better than three weeks ago. These past few months have been particularly hard on me. With worrying about hubby every time he gets sick, or loses a little weight, caring for our daughter, working full time, looking to start back at school, not to mention worry about my own well being, I haven't had time to absorb the thought of new meds.

I consider myself a person with a positive attitude, smile at someone, this will make them feel good and they will smile back. So, I think through all this I have been a rock. But even the biggest boulders can crumble. I believe in the saying that "God won't give me anything I can't handle". I'm a firm believer in that.

Doc has given me a 3 month extension on getting me back on meds. So, we will see what will happen then.

God bless. Keep the great attitudes flowing :)

--------------------
The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.

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Anonymous
Unregistered

Re: My story new
      #133683 - 01/28/05 01:47 AM

My child and I were diagonsed in 95. She was 4 1/2 then. Luckly we were able to find wonderful dr.s and guess what, they are military dr.s, but they didn't know where to send me for support and get information. I did find an AIDS organization and went to group. I was so scared. Group was such a wonderful thing. I established bonds with people from all walks of life. Found real understanding of the gay community and learned to respect them, but most of all I found out information sources. Hemo-pathic and vitiams that slow down HIV. So read, read, read, if you don't understand it read it again. BETA, magazine is a great information tool it is on line and I believe you can access it through this the body's website, so you can learn of new treatments, warnings and clinical trials.

Before stating the new med's have your dr. to the test to see what your virus had mutated through and also think about the side effects from the previous med's you have taken. The dr.s now know of many different combinations to take. You can also find out from BETA, what med's cause hair loss, bone densety, and yes, me too, the beer belly, big boobs, and no meat any where else. You might want to think about saving the fuzeon for the last line of defense. Be informed as much as posible. Also perhaps with an AIDS organization you could get some help caring for your husband and house.
Remember, you need to take care of you too. Where would your family be with out you. Let the dishes go and take a nap. Read a book, enjoy your family. I was told "women get sicker quicker", because we take care of our family first and ourselves last. Hopefully the area you live in isn't such a small town that you can get the help you need. Don't let the dr. push you into something your not ready for. And get counseling, or a support group. With a support group you won't feel so alone. I hate having to keep the secret too, I have just moved into a small town, where I lived before most people knew me before and when we were diagonsed, and no one freaked out that I told, but there were a few I didn't tell, simply because I knew they wouldn't understand. Stress is one of the worst things for us, it does make your viral load go up. I am taking anti-anxity meds, and anti-depressents, with vit's and herbs. I haven't been on the AIDS meds for about 3 months. When my viral load starts to rise, or I have had too busy of a day, my body gives me suttle sign to rest and get back on my meds. Sleep is when our body heals. I usually get a soar throat as one of my signs.

I have read the other e-mails that have spoke of God, yes he is there, but he can't help if you don't ask. I use meditation, guided imigary and self-hyponis, found at book stores or on-line. They help keep me semi-sane. ha, ha.

Did you get over the bellpalsy? There are homopathic remidies to get your face function back also.

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Anonymous
Unregistered

Re: My story new
      #133688 - 01/28/05 04:32 AM

Hi My Dear
I can see and feel your depression. I remember when my wife and I get the report from the doctor, we never believed it.
Because I married my wife as a virgin. She never slept with any man except me. Unfortunately she was given a infected blood at the hospital when she was very sick and running out of blood.
My dear my advice to you is NEVER UNDERESTIMATE WHAT GOD CAN DO FOR YOU. TODAY WE ARE VIRUS FREE BECAUSE OF THE POWER OF PRAYER AND ANNOINTED MAN OF GOD WHO PRAYED FOR US IN TIME LIKE YOURS.
Pray to God and He will direct you the right church where miracle will happen to your life. Jesus came that you may have life and have it more abundantly. So you will LIVE.

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