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”.
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!”
In the United States, more than 1 in 5 new HIV diagnoses were in young people aged 13-24 years.
Only 10% of sexually experienced U.S. high school students have ever been tested for HIV.
Condom use has decreased among teens, with more than 40% of sexually active high school students not using a condom the last time they had sex.
National Youth HIV & AIDS Awareness Day is recognized on April 10th every year to inform the public about the effect that HIV and AIDS have on the young population. Additionally, this day features the work that young individuals across the United States have created in response to this noteworthy public health issue
What can you do?
Get educated. Learn the basic facts about HIV transmission, testing, and prevention.
Get tested for HIV. CDC recommends that everyone between the ages of 13 and 64 years get tested for HIV at least once as part of routine health care. Contact your health care provider about testing.
For those living with HIV it’s important to keep up with what’s going on and sometimes we need reminders to help us. When we’re first diagnosed we are given so much information, it can be overwhelming.
A little refresher now and then can be very good. I know, I have forgotten and need occasional reminders. Here are a few very good videos to refresh our minds and maybe teach us something new. To view the videos, just click on the links below.
We all feel at times that we are defeated by our past mistakes or past experiences, but we have to believe that we are overcomers! And, no matter what happens and comes our way we will defeat it.
These are some things that help me to overcome my inner enemy. Changing my mind to what can go right instead of wrong
If I am thinking that am going to fail at something, I tell myself I will pass.
Expecting the best will happen when my family and I get together.
He or she will accept me, as I am, when I tell them my diagnosis, and if not, it is not the end of the world, there is more life to live. They’re missing out, not me, I understand that rejection is God’s protection.
My self-esteem is high because I honor who I am.
I am grateful for my healthy body. I love life.
As I forgive myself, it becomes easier to forgive others. – Louise Hay
I am beautiful.
I will succeed
Using humor and fun around someone that makes me happy.
Going out to eat.
Remind myself that the negative thought that I’m thinking is only negative; it has no power other than what I give it. When I give it power, it controls my destiny.
Watch your thoughts, they become words.
Watch your words, they become actions.
Watch your actions, they become habits.
Watch your habits, they become your character.
Watch your character, it becomes your destiny. -Lao Tzu
I surround myself with positive people, who are headed in the same direction as me, or who are already there. Don’t be afraid to jump into something new, live outside your comfort zone. Enjoy life!
I 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.
Using humor and fun or being around someone that makes me happy.
Reminding myself that the negative thought that I’m thinking is only negative, it has no power other than what I give it.
I can never forget how I always felt that everything was my fault when something went wrong, or I could never do anything right and needed the approval of other people.
Now that am older, I understand that being a victim of abuse had me in a box that I was living in and didn’t know how to escape from it. I didn’t know how to be free from it. I was walking around in a box. I wanted to jump out like “Jack in a box” waiting on someone to come wind me up and hoping I’m free from all the pain within me. That never happened. My pop-outs were when I became extremely intoxicated and ended up in the bed with someone feeling free for just that moment.
The next morning had me feeling like I was abused all over again. I asked myself what are you doing here, and should I add on top of that feeling less than, because I was a high school dropout, and hopeless and wanting to try something different than alcohol to medicate my pain. Then I tried ecstasy, but should I say it tried me. Let’s just say, I realized it was not for me. I was just going to stick with my drinks. I thank God for that. Years later I was still playing the victim roll, and not knowing how to be free.
Then I met my new frenemy, and her name is HIV, but should I say that she was the best thing that happened to me. She got me in a place where I had to accept my past and face my reality and the things that happened to me. Now I am stuck in a place that I have to use the F word all the time and that’s FORGIVE, when I really want to say F you!
I was tired of running and wanted to be free! I didn’t want to be like Jack any longer, having to wait on someone or something to come wind me up and free me. I wanted to be free, and stay free, and the only way that I was going to do that was to forgive myself and everybody who hurt me. So I choose to forgive.