Category Archives: Emotional Health

Supporting Loved Ones with HIV

Emotional Health, Support, , ,

When I was young, I can remember my aunt going through a sickness none of us kids understood. No one told us not to do this or that concerning her, so we treated her with much love and care. We did not understand at that time that her health condition was, to others, something that sometimes breaks families apart and makes your friends treat you like a walking contagion. We did not treat my aunt that way and I would like to feel that I was allowed to form a better relationship with her through that time.

When speaking to my mother about this, she mentioned that it was very important for us, as a family, to be there for her. It was a big transition not just for her but for the entire family, and the way my aunt viewed life would change. We didn’t want her to feel like we had abandoned her or were walking on eggshells around her. So, instead of pushing her away with the stigma of what other people in the ’90’s thought about having HIV, we chose to draw her closer.

As a kid, that was my view of a person living with HIV, and how I, and my family, supported our loved one through that situation. We laughed with her more, made sure she rarely had to cry alone, and showed our love and support in more ways than one. I believe we celebrate her life every time we educate another through her story.

I feel that a person living with HIV only wants their family and friends to have the opportunity to understand their health condition and help them be strong along the way. No one wants to go through anything in life alone. No matter the diagnosis, your loved ones deserve to have someone to lean on.

So, in response to the question of how you can support someone that has just been told they have an HIV diagnosis, the first thing I would suggest you ask is, “Are you ok?” Not just physically, but ask about their mental health and take notice of their emotional state, as well. The second thing, depending on the nature of the relationship, would be to get the information/facts in order to support them properly. As a child, I didn’t know it, but my family took the time and educated themselves, making sure we were all safe. Just love them! I believe that’s a major aspect of understanding what’s going on with them. Make sure they know you’re there and they can come to you if need be.

To sum this up, I want to say, “BE PRESENT. EDUCATE YOURSELVES and SHOW LOVE! Your family/friends are still the same people. HIV DOES NOT DEFINE THEM.”

Guest Contributor – Love

Still Standing

Emotional Health, Inspiring Stories, Support, ,

Several years ago, I was at a point in my life where I was suicidal. A close friend of mine was telling me about a pastor, “This pastor is trustworthy and very supportive. You can go and talk to him about anything. He will give you the best advice and you don’t have to worry about anything.”

I was at my breaking point and I needed help. I don’t even remember calling the pastor. I just reached out. I just remember being in tears. I don’t know if I was drunk, I don’t know what was going on. I just knew I was thinking about suicide.

Wanting to trust someone and seeking help and guidance in a spiritual way, I went to see the pastor that my friend suggested. With the pastor, I shared everything from before my diagnosis of HIV, after my diagnosis, my good, my bad, my wrongdoing. I told this pastor everything. It was so comforting. The response that I received, the reassurance at that time, was so real and so loving. I just felt so comfortable that there was a home there for me and my children.

I trusted this person so much and this was my last resort for trust. I had been betrayed by family, friends, the streets, and by the school system. Sometimes, I feel like I even betrayed myself. I wanted to be accepted, to know that I’m not any different than anyone else. To not be put in a box or feel like I’m in a cage because of what I’m telling. All I was looking for was acceptance.

A few months later, after disclosing my HIV diagnosis to my pastor, we were at a church event, but there was also a group of people there that I didn’t know and didn’t trust.

During the sermon, the pastor began to speak about my health situation. At first, my name was not brought up, but my health situation was. My pastor didn’t refer to my correct diagnosis (HIV), but he referred to it as “sick.” That hurt me, knowing that it was me he was talking about.

As he continued with the sermon, he disclosed my name. I felt so stripped, bare naked with no cover, and everyone was waiting on my response. I couldn’t run anywhere. I was right there in the middle of everybody and they all knew who I was. I felt betrayed and couldn’t believe he just straight up did this to me after I had told him what happened to me, and to turn around and call me “sick” and expose my name was a straight betrayal.

I can’t really explain my feelings at that time; it felt like someone just pulled my heart out. It just had me feeling like the world was not real. Like God was not real. It made me feel like, “I turned to you and this is what you do to me.” At the time, I didn’t realize that men can use God as a cover-up to do their dirty work. I did not have any thoughts of suicide, but at that time, I felt like God did betray me like there is no God. I kept asking God, “How could you let someone do this to me after I let them know what’s going on?” I looked to this man of God, I came to him to get to God, but I know now that it was ungodly, it was not right.

Even though this happened to me, I think others need to disclose their status to their congregation because not everyone is educated about HIV. People will take stuff, will run with it, even if they have a mature mind. The church is like a hospital, people come in, they have different issues: depression, anxiety, cancer, life issues. The church is the mental hospital, the healing hospital, the counselor, the teacher. I feel like people should be able to walk into the church, feel relief in the church, but you can’t because every church is not the same. Every leader is not the same spiritual advisor.

I think pastors should put themselves in that person’s shoes and say, “What if this was me?” Look at it as if it was one of your loved ones – do not judge them. Let them know it’s okay. Always have open arms, listen, pay attention, be real. The worst thing you can do is betray them. When you betray them, you’re betraying God, because God put them there so you can reassure them. This is God’s way of using you to bring an individual to him. We need more people to be real.

Be careful who you trust. I’m still learning. But, also have faith and trust in God. I know now that you don’t have to turn to people to reassure yourself that God is real. Would you rather stand by God and be judged by the crowd or stand by the crowd and be judged by God? I say that because the crowd can leave your side at any time, but God will always be there.

– Unhurt

 

My Journey: It Could Happen to Anyone

Advocacy, Emotional Health, Inspiring Stories, Lessons Learned, Support, , ,

As a woman living with HIV, I have been through a lot in my life. As someone who was born with the virus, I grew up taking medicine, going to numerous doctor appointments, and getting stuck with needle after needle. This was normal to me, as I never had a life before my HIV diagnosis. Being born with HIV puts you in a different category from those that acquire it later in life.

I was born in the ’80s, at the beginning of the AIDS epidemic, and the virus was still so new that people didn’t really know what it was or how it was transmitted. At that time, they had no medicine to treat it, and I was not expected to live past the age of four years old. My birth mother had her own problems and so almost immediately after I was born, I was taken from her and placed in foster care. Thankfully, I was placed with a foster family that would become my forever home. Growing up, I never knew why I had to go to so many doctor appointments or why I had to take pills every day. Most of the time, I would find ways to not take my medication because it made me feel sick and I felt better without it.

My parents would set out my pills for me each day and I would flush them, throw them away, and do everything with them but take them. I ended up in the hospital for a month with stomach colitis because of the inconsistency with which I took my medication. Seeing me struggling to take the medication and my poor numbers as a result, my parents finally sat me down at the age of 12 and had the family therapist tell me my HIV-positive status. At that time, I did not really have any idea of what HIV was, so I immediately told my two best school friends. I was lucky that they never told anyone, or if they did, I never heard about it or was ever treated any differently. As I grew up and went on to high school, I started becoming aware of how negatively those living with HIV were perceived. I made the decision not to tell another living soul, and I did not. I still was not taking my medication consistently, so I had no trouble hiding that part of it. If I spent the night at a friend’s house, I would not even worry about not taking my medication. My friends would sometimes ask me why I would not donate blood when they were doing it, and I would just tell them it was because I was afraid of needles. I kept quiet about my status for the rest of middle school and all through high school.

To this day, those classmates and friends that I grew up with, still don’t know that I’m a woman living with HIV. This unique perspective is one of the many factors that have shaped me into the person and woman that I am today. I have always been motivated but became even more so after the birth of my son, who is negative. Being a single mother, while also living with HIV, has brought out a strength in me that I did not know existed. I grew up in a stable, loving environment and this is the kind of life I am motivated to give my son.

I recently graduated with my master’s degree in Business, with a focus on Healthcare Management. It was an online-only, 2-year graduate program, and in those two years, there were many times when I wanted to give up and throw in the towel. I stayed up late to work on assignments. I was exhausted, nervous and stressed, etc. But I put my nose to the grindstone and kept pushing forward because I knew, in the end, it would be worth it. I would be one step closer to achieving the goals and dreams I had planned out for my son and myself. During the two years I was in school, I still had to keep up with taking my daily medications, going to my doctor’s appointments, getting labs drawn, and working a full-time job. There were some nights I would be so busy with my son and doing schoolwork, that I would forget to take my medicine. On other nights, I simply wanted a break from swallowing pills, so I would make the conscious decision not to take them at all. During all this time, my viral load never increased beyond undetectable, but my CD4 count did drop some, which I attribute to the constant stress and exhaustion of it all.

Being a mother, single or otherwise, is definitely stressful in its own right. But, when you add school, living with HIV, making sure to eat healthily and exercise regularly, working, and so on, to it, everything becomes one big melting pot that often threatens to boil over. I have always found ways to push through the hard times because I have had no other choice. I have a little person depending solely on me to make the right decisions. I am thankful and appreciative to have the support and generosity of great friends and family, which is not something that a lot of people have. Their love, empowerment, and inspiration, it helps motivate me more to live a life that is successful, rewarding, and courageous.

– Crittlecakes

Togetherness – Stronger Together

Emotional Health, Support, , ,

Yesterday I was invited to join a Zoom call with some women from a support group we all belong to. At first, I hesitated joining in.

Since the call was several hours away, I went on with my scheduled activity. We had workers rebuilding our front deck floor.  It took 10 hours with breaks, etc. By the time the workmen left, I was exhausted. I had worn down, as if I had used the hammers and nail guns myself.

While I freshened up my hair and added a little make-up, I debated about not joining the call. I felt almost like crying, I was that tired or exhausted. My husband kept coming in to interrupt me to help handle the paying and saving goodbye to the young men. I told him I was preparing for something for myself. Finally, the guys left and hubby wanted to rehash the work, etc.

By this time it was past the 6:45 scheduled connect time. Again, I debated skipping the call. No! I am doing this. aSo I quickly rushed around gathering up what I might need, my phone, my laptop, my drink, a snack, a few things I wanted to show them. Whew! I settled on my bed, rearranged my pillows, my throw, and checked to make sure nothing was showing that I didn’t want seen. Lol. Gave my laptop a fast glance to see if I could quickly figure out how to use it for the call? No, I don’t think so, too complicated for my brain now. I clicked on that link and ….it tells me I have to download an app. Wth? This seems ill-fated from the get go.

Finally loaded, click link, enter number, password, okay…..what? It says the person is not ready yet. Lol. Lol. Lol. OMG.

Finally a face pops up…..wearing this strange looking GET UP!  Oh yeah, I know that face. Lol. Now I get it… nothing unusual here. Lol. Looking fabulous even in this funny hat, mask, and necklace.  Another face pops up. OMG, I know her too but what the heck is she wearing? Then another, and another. Wow! These gals really planned and here I thought I was prepared. Lol.

I think eventually we had 9 – 10 – 11 or so women log in to the Zoom meeting. I am not the best technical person so I only saw one face at a time, except for Mama and daughter, and they kept changing. Lol. One or two were only instant glances, then gone. Technical difficulties for a few and we lost them.

After all the greetings, hellos, and laughs at the get ups we started a real gabfest. Due to some previously unknown planning, one fearless leader asked what we’ve been doing while in “lockdown”? We discussed our lives and a few difficulties we’ve had. Thankfully no one has been down with coronavirus in our support group. There have been some family, more distant, suffer and survive the virus.

We were asked what we miss most during the stay at home requirements? Some really good answers. Most say family, going out in public, our friends, our group, and shopping (A woman’s 7th or 8th sense you know? Lol). Our little male mascot made an appearance and added to our fun. A very, very smart mascot he is too. A couple gals showed a few pets and we all enjoyed them.

We discussed our fears and worries over our health, our families, and COVID-19. It seemed like our worries and fears sort of matched one another’s. Some of us are all alone at home, and some have family and loved ones that need care as well.  We discussed worries about doctor visits or not going to a doctor. We talked about our stress and what is causing it even more. We talked about many things, but the connection was what was most important! At least it was to me. (I did speak to a couple other women that were on the call and they agreed how great it was. And the connection was needed.)

I’m not sure how much time was planned for the Zoom call but as I was one of the last to sign off,  I’d say 3 hours at least. Lol. (I am a bit of a talker.) And only ended due to a family call and needing to end our talk.

I really, really, really enjoyed this connection with “My Friend’s,” my support group, my sisters, and our little mascot “E”. The bond is strong with these women and I don’t know if anyone else can understand it, unless you have a similar bond with a special group of women or men.

For anyone sitting at home and feeling alone, feeling disconnected or afraid of COVID-19 or some other fear– “Reach Out.” Sound the alarm. If you only talk to “One” person you may feel less alone. You may feel happier. You may feel more loved or just love inside. It’s not an instant fix but it could lift your spirits a little and that sounds a whole lot better to me. I know I felt happy after the call and the “Connection” with my sisters. We are not connected by blood but by our hearts and spirits. ❤️

P.S. When someone I know, even if only on Facebook, loses a loved one, I will send them a link to a song. My go to is Michael Jackson’s “You Are Not Alone”.  It always makes me cry. I cry for every loss, every hurt, every sadness I or anyone else feels. I’m a softy on the inside of this old hard lizard skin.

Wrap Your Arms Around Me! 

Emotional Health

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

Emotional Health, Knowledge Buster, Lessons Learned, Stigma

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

Emotional Health, Inspiring Stories, Lessons Learned

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

Accessing Services, Action Tips, Emotional Health, Inspiring Stories, Lessons Learned, Physical Health, Support

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

Emotional Health, Inspiring Stories, Support, Uncategorized

 

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

Action Tips, Advocacy, Emotional Health, Inspiring Stories, Taking a Stand, Uncategorized

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!”