I am feeling the effects of...

Post created 5 years 1 month ago by Diane

I am feeling the effects of poverty and isolation. I keep trying to pick myself up, but after years of doing this, I find it harder and harder to find that happy place. I suppose the constant worry and stress and bureaucracy is what keep me down. I have no faith in doctors anymore as they have dismissed me when sick right in front of them only to go to the ER the next day and be admitted. They lied to me. 7 years I had kidney loss and they never told me and kept me on TDF cocktail.

How do I regain trust again. I cry every time I go to an appointment. After nearly 30 years I am so battle fatigued with the ASO;s Housing, doctors I have real PTSD now. The state, city, county government has let me down. I moved and the same in the new state. They say there is HOPWA but their is no funding. I was homeless after not being able to afford rent after leaving my abusive partner.and the ASO said go to a shelter at the hight of flu season. Sorry, I can't go to a shelter..I am not going to get lice, bed bugs, the flu and subject myself to thieves and addicts and drunks. I was a working responsible homeowner and lost everything. They still lump us all in the category of addict or low life and I am tired of the stigma.
Anyone here relate? How do you get back your life after loosing everything when the services do not help you and you are all alone and unable to work because you are living in your car and can't eat properly or have work clothes or are sick like me in constant pain and fatigue?

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Women Long Term Survivors

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3 comments

Love you

Submitted by Lovinglife101 • 5 years ago

Diane,

As I read your words, I began to cry. I am deeply saddened to hear what you are going through. Twenty-five years ago, I was in a similar situation. I lost everything, including access to care and treatment, my home, my job, my family, my hope. The system was broken then and I fear the system is still broken today.

Funding to support those of us who find ourselves in challenging situations is almost nonexistent.

It seems no matter how loud we scream, no one hears. No matter where we go for help, the answer is

sorry",
"you don't qualify",
"we can't help you", "
have you tried such and such”?

The answers seem simple, yet, the funding to support programs and implement solutions is not there. People suffer needlessly, increasing fear, and losing hope.

We are not only dealing with HIV. We are dealing with poverty, inequality, lack of social and community support and lack of faith in a system of care, that doesn’t care.

Our system of care is fragmented, meaning, to get the care and treatment we need we must access multiple doors, which are often slammed shut in our face. Many of us deal with multiple health issues including serious biological and behavioral health conditions, yet each provider we see is only accountable for one small part of our needs. Our providers rarely if ever communicate with each other; no one is held accountable.

We fall through the cracks; we fall through the holes of the safety net and the only way out is if someone throws us a rope; with their help, we can slowly climb out.

I am not familiar with the resources in your area. I truly hope you find an agency that can help. Please keep trying, keep reaching out. I hope others can help. I will keep you in my thoughts and prayers.

Thanks loving

Submitted by Diane • 5 years ago

It warms my heart that you replied. I know we are not alone.
I have another appointment with housing worker next week but no help for the past year.
My son finally got a good paying job and is saving for an apartment. He rents a room.
Hopefully I'll stay with him when that happens in a few months while I wait on the 12 housing lists I am on. Staying with a friend but wearing out my welcome. Have my SUV set up for camping and can do that in AZ if all goes to hell at this apt. They party a lot and I do not partake. I don't fit in.they need the dpace back. Will see what housing days and my son next week. Thinking of finding a live work job at a sustainable intentional community but can only do a few hrs a day. I guess I keep at it and hope this is the darkest before dawn. Best to you.

To Diane, a response 3 years later

Submitted by Junie25 • 2 years ago

How are you doing lately ?
I hope you’re improved from your last post, three years ago. I hear that you are really hurt from past treatment in health care. I’ve felt mistreated too. Often when that happens there is a lot of misunderstanding among all parties. Can you see that as a possibility? (Just maybe ?) I too have kidney disease after taking TDF for many years. Also osteoporosis, and several other conditions that normally affect women at a much older age than myself. But I don’t blame my doctors for that damage. All the hiv meds were brand new when first used. No one knew anything for sure; we were the “guinea pigs” in treating hiv/aids.
The experience you had with an ER is not uncommon either. I have to believe that decisions were based on what was known at the time. Not because they don’t like you… My point is that what felt to you like personal mistreatment or neglect was most likely NOT intentional. I sure hope in time you’ve had some better experiences with health care. Without doubt you need and deserve safe and secure housing first of all. That’s a basic human right. Stigma still exists. It hurts. I’ve found that the best thing I can do about stigma is to NOT believe any of the negative, cruel words some others use. We get to define who we are, not other people who know nothing of our struggles.

Sent with love, hope, and dignity !