Just AWFUL!

By Leatrice

1 min read

Short version (for now)...

AZT in the early years of HIV

I clearly remember AZT in the early years. I participated in a conference for women in LA and prepared an abstract. I described AZT as the scrum off the bottom of my shoe and an iron skillet! This was particularly horrible because I have extreme difficulty swallowing (BIG OLE' horse) pills (which ultimately caused the virus to replicate faster).

Treatment changes over the years

The taste was absolutely horrible and ripped the lining of my stomach! Simultaneously, I was experiencing the wasting syndrome and lost 60 pounds in two months. Thank God I can laugh at it now. Another exhaustion was the daily routine of guzzling down 45 pills/syrup a day! Fast forwarding today 1 or pills. Real quick in terms of how my life has been impacted...just like everyone else. And in one of my very first posts, I spoke about the extreme difficulties in disclosing/dating with LIKE-MINDED/compassionate people. And as a result, I have not dated (been "touched") in 21 years. Any form of rejection is HEARTWRENCHING! Therefore, as much as my spirit is willing and my heart is open, the challenge is meeting COMPASSION! So, I just continue being self, my regular/normal routine and find the simple pleasure in the few/lil interactions, wherever. If the Lord blesses in that area great! If not, praise God I am still alive try to find contentment.

Until next time,
eyes rolling in the back of my head! :-)

Happy Thanksgiving!

Peace!

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LizGreen Community Admin
<inline-mention username="Leatrice" user-id="9833963"/> , I am so grateful you shared your story. Your way of writing is so powerful, honest, and you tell a story that is so important for others to hear. Thank you. - Liz (Team Member)
1. Leatrice Member
 <inline-mention username="LizGreen" user-id="2047243"/> Hi Liz, thank you for the kind words! My heart is full to receive support from people that truly understand, even if online. The end of the month will be 37 years since my diagnosis. I've blossomed to use words hopefully to encourage as well as speak truth with grace! Blessings to you! Hope to chat with you again! Happy Healthy New Year! L
Richard Faust Community Admin
Hi <inline-mention username="Leatrice" user-id="9833963"/>. Thank you for writing. It is so important for people to hear/read about how things were in the early years. Yes, there is much to do, but much has also changed and it should not be forgotten what people, such as you, went through back then. I don't know if you have seen this article from Khafre on looking back: <a href='https://h-i-v.net/living/overcome-trauma' target='_blank'>https://h-i-v.net/living/overcome-trauma</a>. I suspect you will relate. Wishing you a Happy Healthy New Year as well. Best, Richard (Team Member)
Leatrice Member
Good Evening Richard and Happy New Year! Thank you very much! I appreciate the kind words. Equally, I concur. I remember about 5 years ago, I was invited to participate in a support group during the extreme winter months. I was the ONLY attendee until another young man if about 18, who happened to be gay. As the mtg attempted to go forth with 2 attendees...he made the comment , 'Oh, HIV is NOTHING!'. I sat quietly until he finished speaking/ gripping my hands tightly. Then I blasted! I expressed my extreme dismay if his incredible lack of knowledge AND that he was diagnosed at a time when therapies have IMPROVED tremendously as compared to back in the day when I was on 45 DIFFERENT pills 3 times a day! When was one those meds I had to CHEW for dear life as it EXPANDED in my mouth with each chew (DDI)! Back when I lived with my head in the toilet! Back when my bunny pajamas didn't 'hold or contain' me when the medicines 'rip the lining if my stomach' (AZT syrup) AND LIQUID IRON for 6 months because of 'PAINLESS HEMATURIA', bleeding via urine like PURE GRAPE JUICE...that 7 different doctors and hospitals COULD NOT FIGURE OUT WHY! BACK when there was NO SUCH blood test to determine a STD diagnosis of HIV! BACK WHEN I had to have a VAGINAL biopsy to determine a diagnosis. The following 2 blood transfusions. And let me NOT fail to mention again the 60 pound weight loss in two months! Oh, let me not forget the 24 surgeries HEAD TO TOE with 9 of them in ONE spot! As I shared some of my story, this young man grew silent and then offered me an apology. It is by God Grace that I/we survived! 
1. Leatrice Member
 <inline-mention username="Leatrice" user-id="9833963"/> Leatrice ...and by the way, no RESULTS via biopsy. It was not until 4 years later that THEN blood test were able to identify a diagnosis. 
2. Richard Faust Community Admin
 Hi <inline-mention username="Leatrice" user-id="9833963"/>. I think this story is so telling. Many young people don't mean to be disrespectful and uncaring - they just don't know. That said, they need to know what happened before them, what this disease can do, and why continued progress is still necessary. This is why (among other reasons) your stories are so important. Best, Richard (Team Member)
Leatrice Member
Hi Richard! Thank you and I concur! I was just speaking in this very thing last night, being more open and disclosure issues. Absolutely understanding the desire not to, however, of course, this is one of the great reasons why people are STILL being diagnosed. However, getting around the rest of rejection is an incredible mountain to climb fur some. Equally, the matter of HIPPA/ privacy concerns. Lastly, in a mtg lady night I believe I encountered a new member)newly diagnosed as she was crying uncontrollably while speaking. I began to share my opinion and difference between someone being diagnosed with cancer compared to HIV. 1. because cancer is considered 'accidental' that NO ONE asked for! Well, no one asked for HIV either. Yet the difference/STIGMA is the association with drugs, alcohol or a risky lifestyle. Yet that is not the case with all (BLOOD TRANSFUSIONS). So with all of that, I agree that MORE STRONG WARRIORS to be bold and speak up to DISPEL the myths concerning pos people! Human, living, caring, capable, compassionate people as well! Until next time!
Leatrice Member
'for' pardon typos...time to rest my eyes
Robert Brunet Moderator
Hi, Leatrice. I have so enjoyed reading your posts. I appreciate your passion and drive. I remember the AZT days and watching friends consume handfuls of those little blue and white pills to worsening effect. I started with DDI/D4T (back when you had to mix the DDI powder with water before consuming). It seems like we've come so far, but not far enough. Please keep sharing your stories. Hearing from others in our community lightens the burden. Take care! Robert Brunet - (Team Member)
Leatrice Member
Hi Robert, thank you for your kind words! I so appreciate it! I was actually thinking about this site earlier and here you are reaching out. Thank you! I will absolutely continue to share thoughts and stories especially when questions/comments are posted where I share a good word or suggestion. I equally offer you the opportunity to reach out to me if you don't hear/receive a post from me i a while OR if I miss something that you think needs my attention. Lastly thank you for all you do! 😀