Category Archives: Emotional Health

Wrap Your Arms Around Me! 

I’m getting excited about an upcoming conference with several of my friends and I will attend in a few weeks. It’s filled with so many old friends and we make new ones.

It feels so freeing to gather with so many people “just like us”.  A few hundred people doesn’t make me uncomfortable but envelopes me in warmth. Their arms are kind and loving.

The need to hide our status or health issues is forgotten and we can and do speak freely. So many people and so many friendly faces. It’s like a family reunion where we all may look different but we share a lot. We can catch up with old friends and share with new ones. And try to make all the “newbies” comfortable and welcome.

We cry over the friends we may have lost over the past year. We cry over the strangers we never had the chance to meet and now they are gone. Gone but not forgotten. We try to make sure each person is mentioned and we celebrate their life. I hope once I leave this world my name is mentioned at this conference too.

We attend workshops to learn new ways to make our voices heard. We attend to learn about medicines, side effects, government programs. We learn new skills and we get inspired by so many others doing just what we do.

We have a few guest speakers who tell us their stories and make us feel included. We even have some comedy and laughs.

We have lots of laughs and smiles are big. And that is what feeling free does for us all.

The meals are great. They offer us tasty food and the hotel staff treat us with the most respect. The free time we can spend on the beach, use the pools or go shopping. Of course, some just take a nap. Lol.

After dinner and the host’s presentation, we choose what to do. The nights are filled with activities as well as Karaoke, dancing, or just music. Sometimes the hot tub or a cool drink is all we need. Then off to our nice beds and sleep for tomorrow is another busy day.

I come back home usually exhausted but excited to share or try out new things I learned at the conference. Best of all is the friendships and bonds that were started or renewed.

HIV: Through a Different Lens

Testing positive for HIV is a hard pill to swallow, no doubt. As you come to terms with losing the life you once knew, questions race through your mind, “How did this happen? How could I let this happen? What am I going to do?” If you’re anything like me, you’ve probably been called a liar, have been shunned by “friends” and family, and have had job opportunities taken away- all from disclosing your status.

But what if you’ve been living with HIV all you life? The old life others have had to let go of never existed for you. I wonder if anyone ever stopped to think about the stigma for someone like me. For example, Is it easier to live with? Harder? How does a young child comprehend what HIV is? How does a child deal with their diagnosis, how does their body react to the medication? Do they internalize stigma much sooner or is it easier for the unformed mind of a child accept their diagnosis much easier? Are people born with HIV more likely to develop a resistance? When HIV is discussed, it’s typically geared toward newly diagnosed individuals. However I believe people like myself offer a unique perspective when describing their diagnosis and outlook on life.

I was five years old when I learned about my HIV status. I also learned from an early age how important secrecy was and how deep-rooted confusion and irrational hate could be… even from your own family members. You could say that I’ve never lived a “normal” life; judgment and stigma have always been unwelcomed friends of mine. But who ever lived a normal life anyway, right? While my life has been filled with many tribulations, I’m happy that I’ve been able to meet people who are compassionate and understanding. I’ve had a lot more time than most to come to terms with my diagnosis, and I have grown to understand that ultimately the world needs more education.

I understand that being born with HIV can tempt someone to harbor anger and blame, and that’s totally normal—I don’t blame you. Still, I want to show that just because of your diagnosis, you are not “different” and there will always be someone who will listen to you, who will believe, and who will accept you. The most important part is to believe that your life is not over and that you can make a difference in your life because the only opinion that really matters is your own. Look at me, the person who was once labeled by so many people. I’ve taken power into my own hands to label myself happy and proud of all that I am and have accomplished regardless of HIV: a young woman turning 27 in August and a son that is healthy and HIV-free, could you blame me? 🙂

Suicide, My Dirty Little Secret

I live each day with a dirty little secret. Suicide. My sister and I were only 13 and 17 when my mother left; she died just a day shy of her 35th birthday. She was hospitalized after taking some pills three days prior. I lived over 100 miles away. I called that morning to check her status and a nurse said, “Hold on, the doctor wants to speak with you”. Shortly after, a stranger came on the phone and said, “Your Mother just died.” “Why? How? She was listed in fair condition for the past three days,” I asked. I had so many questions, but it was the stranger’s next response that would forever change the world my sister and I have come to know.

“Her heart just stopped.” I was married and five months pregnant when she died, and my sister had been sent to me by greyhound bus two days before. Handling all of the details of hospital releases, funeral homes, etc. is a lot for anyone, but especially for young people. My Aunt who was 27 and seven months pregnant helped my small family deal with it all, and my reliable young husband supported us.

Guilt! Survivors always feel guilty.

Guilt kept me from making that final choice a few times. Since those early days of my life there’s hardly a day that goes by that I don’t think about suicide in one form or another. My Mom’s, my own, and people around me. My dirty little secret. But I never want my children to suffer the way I have, and the way my sister has suffered. My Mom missed a lot by leaving us in July 49 years ago. She never met her grandchildren or her great grand children. I never want to miss out on that special time of life.

When I was first diagnosed with HIV I was in a fog, but in facing reality I knew that my dirty little secret would keep me company and would always be there for me. It was an “out” if I ever couldn’t handle it, or if my family abandoned me.

Do I consider myself suicidal? No!  But I think I understand how or why any person takes that escape choice—it’s like a hidden escape. Someone once said it takes more courage to live than it does to die and I believe that. I’m a strong, stubborn fighter and my courage has held me here for many years. Suicide is not an easy way out, it’s final! And there’s no coming back! So I’ve decided to fight the fight a while longer. Besides, there may be some people who’d like to see me gone and I’m not going to give them their wish. Lol.

Talk to a  counselor—A 24-hour hotline:   (800) 784-2433

Additional Reading: My 10-Step to-Do List for Enduring Depression, Josh Middleton.

http://www.thebody.com/slideshows/my-10-step-to-do-list-for-enduring-depression?ap=818

 

A Woman Living With HIV

My name is Pattie and I am living with HIV since 1992. It’s not easy living with this disease,  but you can live a pretty normal life if you want it. You have to work at it. You have to be your own advocate -no one will lead the way for you. I think the more you worry about the disease- it the harder it will be for you. Try to live a normal life and make sure you take your meds every day -at the same time everyday -no matter what. There were many times in my past that I would party all weekend and didn’t eat- but I still took my meds at the same time and that is one reason I believe I am still living today.

 “Your tracks will never end as long as you go to meetings and make friends.”

The support groups really helped me to understand what my body is going through. You are not alone -there are a lot of women living with HIV. You have got to have the will to live when things start to go wrong with your body. My friends from the groups, that I go to, really help me in life- where to get help with any problems that I have. Talk to people in your situation who are HIV positive.

For the first 20 years when my husband and I were diagnosed, we didn’t tell anyone. So all of those years we never talked about it unless there was an article in the paper or we had a doctors appointment. I didn’t know anything about HIV- only that it kills you. When the word HIV or AIDS came up I would freak out and leave the room and conversation because it wasn’t good things -it was always bad things people said. All the people were so uninformed- it used to get me so mad. They always talked down about people living with HIV. Some doctors didn’t even want to touch me or take care of me- they looked at me like I had leprosy. But when I found out about the support group on HIV, I was the first one there. I wanted to know and learn about everything that went along with the disease.

I still have a lot of life in me and many good, good friends that have helped me get to this point in my life. I am Happy and most of all UNDETECTABLE of this disease because I always took my meds every day at the same TIME.    “Your tracks will never end as long as you go to meetings and make friends.”

 

Caring For An Adult Daughter

 

It’s a hard job being a caregiver for an adult child. Sometimes it’s harder than when she was a little girl.

My daughter suffers from “Sickle Cell Disease” and had a severe stroke when she was only 20. Before that she was a college student and very independent. Her stroke made her almost helpless. Thankfully she survived and grows stronger everyday.

I had to take charge of her care at home. I learned her medicine schedules, side effects, when to re-order her meds and pick them up. I cook her meals at her scheduled times and what doesn’t interfere with her meds. I also cook what she likes and I have to refuse some sweets and snacks that are bad for her.

I have to follow her doctor’s orders, keep her appointments, and schedule around my own doctor requirements.

She receives some outside help with a caregiver aid however I am still her main caregiver and support. I bathe her and take care of her personal needs and put her to bed.

My social life is almost non-existent but I try to get some much needed time for myself.

My charity program is a time away and I attend my support groups when I can.

My own health is not good but I push forward for the needs of my daughter.

That is what it means to be a Mother. I always answer to “Mommee, Mommee”.

 

It’s Me Again

I was diagnosed in October 2009. I was given my test results in Jan. 2010, my CD4 was 12 and my viral load was over 157,000. I was started on Isentress twice a day plus Truvada once a day. Three months later my viral load was undetectable (under 75) and my CD4 was 57. I have posted my continuing growing results on LTAI’s Blog before. Now on Jan. 9, 2017 my CD4 is 445, my CD8 is 473, and my helper cells are at 28% (CD4-CD8 Ratio). My health continues at a pretty good condition for an old gal of 65 years young. My health issues, which I had before HIV, have not
worsened, such as my IBS, acid reflux, etc. I have some heart issues (at 11-12 years old and had rheumatic fever) and suffered a mild silent heart attack 18 months to 2 years ago. I suffer some mild-hard chest pain and have been on continued long- acting nitro med (Isosorbide). I take blood pressure medicine and anxiety meds and both are said to be related to my HIV and other meds. However at 65, in today’s world, I think I would be on both even without HIV. It’s always important to see our doctor, take our meds and try to stay positive and active when we can.              

I attend my “Let’s Talk About It” support group monthly and attend other advocacy meetings whenever I can. I talk with my support and advocate friends often, and I send Pen Pal letters to 5 other women living with HIV who I help to advocate for. I
also have a special email pen pal in Croatia, who is also living with HIV, that I email and have for almost 7 years. I feel this support and advocacy helps not only me but the other women as well. I am a member of a newly formed Leadership group for women of our communities. We have to remember that if we don’t advocate and fight for ourselves, we may get lost in the shuffle. Today’s political world is crazy and we must not be forgotten or pushed aside. We can’t allow someone else to make choices for us, without us!

Remember the words of Elizabeth Taylor:
“I Will Not Be Silenced. I Will Not Give Up. I Will Not Be Ignored!”

 

Supportive When You’re Not Feeling It!

How can we be supportive/inspirational to other family and friends when we feel so…. lost ourselves?

Image from inextremiss

I have never been a what I call the “in your face type” with “things are wonderful and just smile”.  I am a realist and like to face obstacles head on with truth.  I can be supportive when someone is down and needs immediate support but I wonder later was that the right approach.

I am not a “Debbie Downer” but I believe in telling the truth when someone needs it. Some of the fake support others dish out doesn’t faze me nor does it help in the long run.

Facts, not fairy tales, I guess is what I believe is best. I know, I know “some” can’t handle the facts but I feel they need truth and facts head on to ditch the fairy tales.

How does everyone feel about that or how do you give support for the doom presently approaching us?

 

 

 

Ways That Help Me To Be Free From My Inner Enemy

confidence-wordsI battle with low self-esteem because of things I have been through in my life, or things that have been spoken or done to me.

I never knew how to break free from it, I always felt less than anybody around me because of the way I looked or how I spoke and all I wanted was to feel love. I was finding love in the wrong places or things. I was looking for a way out, wanting to know how to escape everything within me and learning how to love me.

These are ways that help me to be free:

  • Taking responsibility for my own life and decisions, which can be hard at times, but I have to do it.
  • Forgive, which is a choice, not a feeling. Never give a person or something so much power over me that I choose not to forgive.
  • I no longer rely on someone else’s validation to feel good about myself. When I started taking responsibility for myself, it began to build my self-esteem and stability within and gave me hope. I started feeling good about myself.
  • Self-esteem problems can damage many important parts in my life, like relationships, ambitions, achievements, and health when playing the victim role.

I never want to be powerless and helpless another day in my life. I lost many years of my life by being powerless and helpless. I was giving someone else command over me, and allowing them to have control of my responsibilities and relinquishing my God given power and will.

I replace a negative with a positive by:

Changing my mind to what can go right instead of wrong. I learned the mind can only think one thought at a time.

  1. Using affirmation.
  2. Using humor and fun or being around someone that makes me happy.
  3. Reminding myself that the negative thought that I’m thinking is only negative, it has no power other than what I give it.

Most of all fall in love with me!

 

 

 

The Secret of HIV

 I was watching The View when I heard Cookie Johnson say when her husband ”Magic Johnson” confessed that he was HIV she had to make a choice. Her choice was to leave and let him die or stay and help him live!

why-love-is-a-good-drug-for-mind-and-body-ftrShe said how hard it was for her when he had to close himself in a room and call all the women he had, had sex with over the past 10 years. I heard her say this and I thought “This is my story in reverse.”

I’m the infected spouse and my husband decided to stay and help me live. He stood by while I had to talk to the health department and disclose my sexual contacts. He wasn’t literally in the room but he knew I was online and on the phone giving names and contacting those I may have exposed or who may have exposed me to HIV. He chose to stay and in the early days or months he probably thought I wasn’t going to be in his life and our children for much longer. He chose to stay and help me fight this disease. He was tested within hours of my diagnosis and tested negative. I thank God for that. He chose to care for me when I couldn’t get out of bed. He drove me to every appointment to sign up for care, for medicines, and everything connected to infectious disease. He keeps me on schedule and checks for any new side effects or symptoms. He drives me to the hospital when I have to go and stays until I force him to go home and rest. I wouldn’t say he’s a Saint but he’s pretty darn close to it.

We still argue as many couples do that have spent so many years together. They are not big fights more of disagreements because we don’t agree on a lot some days. One thing I guess we do agree on and that is that it’s better staying together than being apart. And alone.

I love this man whom I decided to marry so many years ago and will try to make up for the terrible choices I made in a bad time in my life. If he asks something of me I can not refuse and part of that request is keeping my status private from most of our life. Secrets are hard for me and lies are a close second.

Now in our later years we care for one another. I guess the part of the marriage ceremony fits here. “In sickness and in health” We are the elderly couple sitting together on the park bench or walking on the beach. We may not be always holding hands but we will be very close together.