1st year anniversary with my "other" life partner

[ga1964]

Last Thursday (Thanksgiving) marked the one year point that changed my life forever.  I was rushed to the ER. in the middle of the night with severe abdominal pains.  After being examined I was told I would have to have major surgery.  While waiting for the antibiotics to take effect so that I could have the surgery, my doctor had me take a HIV test, and on Dec. 1st I was told that not only had it come back positive, but with a CD-4 count on the 190 area, that I had AIDS.  Needless to say that the next 6 weeks of recovery from the surgery was bad enough by itself, but I also laid in bed wondering how long I had to live, how my family was going to react, if my life partner was going to leave me (not that I would have blamed him), because I had brought this new "partner" into our relationship. 

Now it is one year later and I have been taking Atripla and my CD-4 cells have risen to close to 600 and my viral load is undetectable, except for the last set of numbers that came back in the 290 area and after taking another round of test my CD-4 was back to 600. (evidently someone at the lab was not paying attention to what they were doing or did not care if the results were correct or not, I don't know, but it scared the shit out of me).   I have told my parents and they have been supportive as best they can, and my life partner has stayed by my side and tries to understand what I'm going through.  My doctor put me on Paxil for the depression that I have been having and it seemed to help for about a month and then I started getting electrical shocks through out my body, so he switched me to Wellbutrin, but I still was getting the shocks, so now I have been put back on Paxil and have to take Amitriptyline to control the shocks. (so far it is working).

I know I should be happy that my parents and partner have been there for me, and I am, but I feel like I have come out of one closet only to be put into another.  My parents want me to tell my brothers and sisters, but I can't seem to find the "right time" to tell them.  I know that they would stand by me, but we only get together as a family on holidays and I don't want to drop this bomb on them at a time that we are together to be happy and I ruin the holiday.  It is hard for me to open up to my family, because I have always been a private person and have dealt with life problems on my own.  I'm always there to try and help them when they are in need, but don't feel comfortable in asking for help from them.  I know it sound stupid, but that is the way I've always been.  I don't want them to worry about me, they have there own challenges in life and they don't need to be burdened with my problems.  Over the past year I have gone through all my savings, my business is near bankruptcy, I don't know how much longer I can keep up my insurance, and when I talked to my doctor, he basically told me it would be much more expensive to pay for my meds without insurance, which I figured out on my own, but if I can't afford to pay for insurance, I don't know how I can afford to pay for my meds by myself.  I am coming to a cross road,  do I keep my partner and I in a home and quit meds, or do I take meds and loose our home?

I'm at the point of calling it quits.  I would rather end it now and at least be able to leave my partner some kind of financial nest egg to help him start over, than to spend it all on meds and doctor bills just to die and leave him homeless.  He deserves to be able to start over with at least a house to call his own.  He could have walked out a year ago, but he chose to stay (why, I'm not sure?  I don't know if I could have stayed if the shoe was on the other foot, and I know that that sounds bad).  I'm tired of being tiered all the time, not having any energy to do anything and wanting to sleep constantly.  I can't afford to do the things we used to do like traveling or even go out dancing, or eating out.  Every dollar I make goes to pay for insurance, doctors, test, meds, etc.  If all I'm going to be able to do is to work to try to keep up with the cost of doctors, meds and such I'd rather end it today and let my partner have what little savings is left for him to start over.  Lord knows he deserves it for staying with me for the last 20 years.  It's my fault for getting this "other life partner" and he should not have to suffer for my fuck ups.  I know he and my family would hurt for a while, but with time they would be able to move on and not have to constantly worry how my health is, are my numbers better or worse, what did the doctors say? and all the other questions that are asked.  I no longer fear death, it will be a welcome peace.  My only sorrow is that I was not be the partner that I should have been and that I will not be able to see my nieces and nephew grow up.

HAPPY ANIVERSARY TO ME!

What a fucking mess I made of my life.

[Paulette]

I wish I knew what to tell you to make you fell better, but i can share my story in hopes it makes you feel better,  I Just celebrated Number 4 back on 11/7/2007.  And i say celebrate because it's one more year that I've been able to fight this little virus and win. And my  first year was a rough one and i felt like giving up, But had to make the dision to take back my life and not give up the fight. I might not win every battle, but i be damn I Will Win This War that's going inside of me. I think the first year is rough for everyone. But You have two options You can die or learn to live with Hiv/Aids. Me i chose Life. They are places that will help you get your meds/doctor's care at your local health department or your local Aids organization. Just a phone call away.  I say F**K giving up. You deserve better than that and so do your loved ones. Here's wishing you a much happier and brighter future. Hang tough it does get better.
Paulette

[Miss Philicia]

Your main issue right now is obviously the financial one, and it's causing you a LOT of stress.  Without knowing the details of your situation it's hard to help, but the best thing would be to locate someone that can assist you in some specialized financial planning, taking the HIV associated medical costs long-term into consideration.  Being partnered adds another level.

You don't state where you live so it's also hard to possibly point out some resources.  Have you tried going through a local ASO to obtain advice.  I know an excellent person for such things but he works out of NYC, but I think when I gave his name to someone here this guy put him in touch with someone he knew in their local area.

I'd still try the local ASO route first and see what you come up with.

[AlanBama]

Hi ga1964.

I don't really know what to say to make you feel better about your situation, but I will make a couple of suggestions:

Take a look and do some reading in our "Long Term Survivors" Forum.   There are quite a few of us here who have been living 10, 15, and even 20+ years with HIV/AIDS.   I will mark my 21st yr in February.

I won't try to tell you that my life is "better" than before I had AIDs, because it isn't.   I don't think anyone's is.   It just forces you to make some hard decisions, about what is important.   I think living is very important, and I made the decision (and still make it every day) to keep fighting.   I will never be one of these people who get up in a support group and say "AIDS is the best thing that ever happened to me, it made me a better person", etc.   AIDS is the WORST thing that ever happened to me, and I would give anything if I could "undo" it.   But dwelling on that serves no purpose, other than making me depressed.

While there are MANY many check marks in the "Bad" column of my life with AIDS, there are also quite a few check marks in the "Good" column.  For instance, some of the wonderful people I have come to know from these forums, who would otherwise never have been in my life.

Several of us LTSers will use the phrase "our JOURNEY with AIDS".   It truly is a journey, and like any trip, there are good points and bad points along the way.
I think you need to do some more work with your therapist/psychiatrist on your depression; perhaps Paxil or Wellbutrin were not working that well for you.   There are lots of other things to try.

I hope some of what I said might be useful to you, and know that many of us here rely on this board as our main support system.   I hope it is useful to you as well.   As one of our youngest members (but "oldest souls") so wisely said recently in another thread, "I love you all so much I wish I never had to meet any of you." I think that sums it up very well.

With love,
Alan

edited to get Jaser's phrase stated exactly as he put it

[David_CA]

Well, I don't have a lot of enlightenment for you.  Maybe your partner stayed with you because he loves you.  Have you considered that?  Couples stay together all the time through illness - cancers, strokes, whatever.  I'd have considered him pretty heartless if he had left you due to the HIV. 

As to the financial issues, I'm sure some others can (and have) given you some info that can help.  It may take some adjustment on your part in terms of income, expenditures, life style, etc.  Is there somewhere you can work that provides insurance?  My husband's job provides his and my State job covers mine.  Maybe a job with insurance will give you income while the insurance covers your meds.

I told my immediate family about my HIV (and that I have a motorcycle  ) while I was laying in the hospital bed.  It was easier to do so then and to avoid continuing to hide HIV, which had caused me a LOT of stress and anxiety.  Maybe the time to tell your other family members is not during a holiday, but to call them (or in person, if you live close) and tell them.  I don't think my family was bothered as much by the HIV as they were about my not feeling like I could confide in them. 

It sounds like you might need to step back a bit and look at the entire situation.  I'm sure you'll see options that you can't see right now.  Maybe include your partner, since it sounds like he's going to be with you.  Take care.

David

[ga1964]

Thank you all for the kind words of support.

Maybe because Dec. 1st is quickly approaching that this is all coming at me so hard.  Last Thanksgiving my parents were in Jeckle Island and my brother and I had went over to have Thanksgiving dinner with them and on the way home I started feeling bad and later ended up in the hospital that night.  This year my parents asked if we wanted to do Thanksgiving dinner in Jeckle or here at home and I could not face going to Jeckle Island out of fear that last year would repeat itself, so we had Thanksgiving here at home which made it easier for me.  I am happy to say that Thanksgiving went off without me ending up in hospital, but I still worry when the next hospital stay is going to happen and how I will be able to pay for it. 

I live in a small South Georgia town and we had an ASO about 15 years ago.  My partner and I helped organize benefits to raise money to help support it until it closed because very few people here would go to it in fear that they would be "outted" by others here that only went to see who in this area was HIV+.  Due to our town being a small community, everyone wants to know your business and then spread it all over town and living in the buckle of the "Bible Belt" that can have serious repercussions, especially if you own your own business as I do. 

When I saw my ID. the first time after getting out of the hospital I asked him if he knew of any support groups in the area, he did not.  He said that with my permission that he would give my name and number to one of his other patients so I could have someone to talk to face to face, but I never heard from anyone, so I have been having to deal with this by myself.  Both my parents and my partner try as much as they can to help, but I have a hard time opening up fully to them because I hate to complain because it makes me feel weak and helpless and they can't change the way things are, so I don't want to burden them when I'm feeling down.  Most of the time when they ask, I'll lie and tell them everything is OK, so they won't worry, but deep down I feel like my world is crumbling around me and I can't keep my head above water.

Being self employed, I have to pay for insurance out of my own pocket and at last years renewal my premiums went up over $100.00 a month more than what they previously were.  I'm scared that when this years renewal comes around that it will go up again.  If it does, I won't be able to afford it and I'll lose it.  I'm already paying $470.00 a month now.  I know if I lose it I won't be able to afford my meds, little alone my Doctors.  I have gone thru all my savings and I am not far from being able to make the payment on my home and car.  Last month I bounce a check for the first time in my life because I made an error in my check book.  I have always been very good about handling my finances and now it seems that I can't even balance a check book anymore without errors.  The hospital and doctor bills keep piling up, I can't keep up with them and the collectors don't give a damn.  I have always payed my debts and kept my credit in excellent standing and now, not only has this disease wreaked havoc on my physical health, but my mental health and my finances.  At this point, I'm worth more dead than alive.

I also get tired of being refered to specialists by my ID. and the first question they say is, " Your HIV+, is that correct?", in front of nurses and aides that work for them, while looking at me like they wished that they did not have to treat me.  I feel ashamed and embarrassed to have to say yes and also fear that they will tell their friends and then everyone in town will know.  I hate having this damn disease.  My ID. wanted me to see a Neurologist to see if I had "HIV-Neuropathy" and I cancelled the appointment because I could not deal with having to tell yet another doctor that I was HIV+ and feel like I was a terrible person with this disease that should be quarantined.  Two months ago I had to see a Gastrologist because my iron count was extremely low and had to have a EGD and colonoscopy (both came back clean), so then I had to do a pill cam (also came back clean). Now I have a couple of thousand dollars to pay for these procedures and still no answer to why I have a low iron count.  If anybody knows of any resources in Ga. that can help me I would appreciate the info.

Thanks once again for the kind words of support and letting me vent here.



 

[northernguy]

ga1964 I'm sorry your having to go through all this.  I know it sounds extreme, but is moving an option to somewhere with more job opportunities and more support?

I know this is getting up on a well-trodden soap box, but I still find it shocking that  the richest country in the world puts it citizens through such hell by not having some kind of universal healthcare

[ga1964]

ga1964 I'm sorry your having to go through all this.  I know it sounds extreme, but is moving an option to somewhere with more job opportunities and more support?

Moving is not an option.  I own my own business here, my partner's career is here, we both have family here, I don't know if I could get another home financed due to the damage my credit has taken from not being able to keep up with the doctor and hospital bills, and I don't know if I could handle the stress of moving anyway.

[BT65]

GA, it sounds like the finances are your biggest stressor right now.  Are you seeing a therapist?  I see one, as well as being on medication for depression, and the therapist really helps.  I don't talk to anyone in my town either who has HIV.  This forum is my main support for that.  My family knows and they are supportive, but we never really talk about it much.  Is there a bigger town close to you that has an ASO?  They could probably help you.  As far as the doctor thing goes, doctors can't talk outside of the office about their patients, they are bound by HIPPA laws.  If they did, they could get sued.  That goes for all of their employees as well.  I hope the iron thing gets resolved for you. 

I really do advocate therapy, especially for people in the depths of depression that it sounds like you're in.  If you can't afford therapy, there is usually a county mental health place that does sliding scale.  Hang in there.