Category Archives: Support

My Journey: It Could Happen to Anyone

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

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.

Interim Guidance for COVID-19 and Persons with HIV

Last Updated: March 20, 2020; Last Reviewed: March 20, 2020

This interim guidance reviews special considerations for persons with HIV and their health care providers in the United States regarding COVID-19. Information and data on COVID-19 are rapidly evolving. This guidance includes general information to consider. Clinicians should refer to updated sources for more specific recommendations regarding COVID-19.

Click here to continue reading.

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”.

 

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?

 

 

 

Conquering Your Inner Enemy

We all feel at timpics-for-natalie-blog-2es 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

    1. If I am thinking that am going to fail at something, I tell myself I will pass.
    2. Expecting the best will happen when my family and I get together.
    3. 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.
  • Using affirmation:
    1. My self-esteem is high because I honor who I am.
    2. I am grateful for my healthy body. I love life.
    3. As I forgive myself, it becomes easier to forgive others.
                                      – Louise Hay  
  • Affirmation:
    1. I am beautiful.
    2. I will succeed
  • Using humor and fun around someone that makes me happy.
    1. Laughing
    2. Skating
    3. Shopping
    4. Going out to eat.
    5. Fishing

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!