JUNE 1, 1998
These new medicines are taking their toll on me. Side effects are "normal", or so I am told. Hopefully, they will fade.
Last night I dreamt that an entire community of youth became infected. I awoke at 3 AM feeling so sad because of this dream. It is a reality that more and more of our youth are becoming HIV infected. They feel so sure "it will never happen to them".
This would be a good time to bring them into my home to spend a day with me....to see the number of drugs I must take daily, just to stay alive. It would be good for them to see what these drugs do to one's body.
Nvwati has been so good while I have been ill. He lays for hours next to me on my bed, allowing me the sleep I need.
He DOES have his moments, however. The other day I awoke to find a some orangish/red rubber all over the apt. It took me a few minutes to figure out what it was. He had eaten the toilet bowl plunger! hehe.
That's my boy......reminding me that he still has a few capers left in him ( not to mention a whole lot of orangish/red rubber ).
I'm really excited about getting my scanner, because then I can scan some photos. Nvwati would like a photo albumn all his own! It will include photos of his puppy friends.
JUNE 2, 1998
As each day passes with these new medicines, I wonder if I am doing the right thing. The side effects are totally exhausting me! Today I didn't get hives, though, so maybe the side effects are beginning to diminish. It's only been a week, but it seems like much longer. I continue to do affirmations as I take each dose.
My pharmacist gave me this little beeper called "ALR" (A Little Reminder). It has been programmed to beep when it is time to take the various medications I do during the day. Nvwati hates the beeper! Each time it goes off, he growls at it. I better make sure I keep it out of his reach, or he is likely to eat it!
I was unable to be on the puter much today because of the tornado-type winds and storm which passed this way. I spent the time away from my puter, looking at photos and trying to decide which ones to include in these pages. I awoke from one of my naps to find a sheet of photos taken of me about 2 years ago, pushed under my door. The photographer took them for an article I wrote about lesbians and AIDS. I have no idea how she knew I needed some photos of me. (Maybe she is on the net and "found" my pages as well??) This is yet, another mystery to me. Things like this happen occasionally, in my life.
I continue to get emails daily, from those who find these pages. So many have told me I am courageous to be living with AIDS. I do not see that I am courageous....strong - yes! But I don't think - courageous. I think of courage as something one has when doing something they don't HAVE to do, but do, anyways. I don't have any choice in having AIDS. Also, I tend to think more of the gifts in this life with AIDS than the struggle.
Even the new "cocktails" are a gift of sorts. They might work for me - and if not for me, then perhaps, after further research is done on them, those who follow may benefit because I was willing to participate in this study.
Having the priviledge of taking these medicines, leaves me with mixed feelings. So many do not have this opportunity. Even in Canada, where we are supposed to have a near perfect health care system (oh no! - I can't even begin to go there......THAT would be a whole new set of pages to do!), many people with AIDS do not qualify to try them. Also, there are many people in developing countries who do not have access to ANY medications for HIV/AIDS. It was a BIG political struggle within me to decide to take them for this reason.
After one of my naps today, I remembered something funny that I would like to share with you.
Each month I am fortunate to attend a Sweat Lodge Ceremony at the home of my Medicine Man. We travel in a van with about 7 men and women. It is approximately a 3 hour drive from Toronto. We have a lot of fun during this trip, sharing stories which were told to us, reminiscing about things that happened to us, etc.
Last month for some reason, it took us much longer to get to our destination. When we arrived, the Elder was sitting by the Sacred Fire waiting for us. He asked what took us so long.
The driver of the van looked him straight in the eye and without a smirk on his face, said: "Gee, I'm sorry. See I am from a rez way up north and am not used to these highways." The Elder explained that it's pretty much a straight trip on one highway most of the way. The driver said, "Yeah, but it seemed that every ten miles, I saw a sign that said 'Clean Washrooms Ahead', so we had to stop so I could clean them. BUT, when I saw the sign that said, 'Clean Motel Ahead', I just put my pedal to the metal and pretended I didn't see the sign!" We laughed so hard, our stomachs hurt!
JUNE 3, 1998
I spent a lot of time today praying for the strength to continue taking these drugs. Each day the side effects seem to get worse. By 7pm I was ready for bed.
I was told that exhaustion is one of the side effects, but I didn't expect to sleep as much!
Anne Marie has returned from a three week vacation in Scotland. I have a session with her tomorrow afternoon. I can't wait to hear all about her trip! I MUST be healing, because the time flew by. Only a few years ago, I would panic if she was going to be out of town for more than a week!
I can't wait to see the look on her face when she sees what I have been up to in her absence (building these pages).
It has finally stopped raining and the sun did try to come out today. It is still windy, however, and the temperature has dropped alot. My bones are sore, so I think I will take a nice long, hot bath, put my flannie pj's on, and cuddle up with Nvwati for the night.
JUNE 5, 1998
I awoke to a beautiful sun waking up up as well today, after a "difficult" night of broken sleep.
Anne Marie and I had a session yesterday afternoon. She was really amazed at what I have begun to do on the Web. Her reaction was, "Fantastic!". I asked her if she would consider doing a journal entry for me. She laughed and said, "Sure. You know you have a good relationship with your therapist when you give HER an assignment!"
Today begins my 12th day on the "cocktail". I feel bad because I have been receiving so many beautiful letters from people who have read these pages, and I just haven't had the energy to answer each of them. Hopefully, I will be able to do so today. I've gotten a lot of requests to have a Guest Book, so I will try to get that done as well.
I also got a letter and photos in snail mail yesterday, from a Chat Room friend. She has web tv and is unable to scan photos to me. What a treat to actually see her face and of Coal, their dog. Nvwati and Coal send email messages back and forth.
CONT'D
To continue reading my online journal, click on drum above.
To choose which page to go to next, click on one of the following:
INDEX
|
HOME PAGE |
| MY STORY |
| MY YOUTH |
| RECOVERY |
| BUFFY |
CHILDREN
| AIDS MEMORIAL |
| HIV/AIDS...TEACHING |
| HIV/AIDS....FAQ's |
| JOURNAL (1) |
| JOURNAL (3) |
|
| PHOTOS(MY
FAMILY) |
|
|
| PHOTOS(MY
PETS) |
| HONOUR |
| AWARDS |
| RINGS |
View My
Guestbook
Sign My
Guestbook
