POZ Community Forums
Main Forums => Living With HIV => Topic started by: pozguy75 on February 17, 2008, 11:00:22 am
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You know it's funny how we justify what we do and how we live. A question that I often get is, "so, what is your life like with HIV?"
I thought I would post my answer on my blog in A Day in the Life (http://web.mac.com/jeromy.dunn/iWeb/POZitively_Speaking/Blog/E48BF901-3969-4ED7-AFA5-6A5B01F3EE1F.html).
I hope to hear back, and know what your answer would be!
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Jeromy, I'm glad you are so actively involved with the ASO there. My day is much different than yours.
I've been on disability since '94, when the wasting syndrome almost got me. I take pills for the HIV, neuropathy, depression, broken and wasting away bones, etc., and I take them 4 x a day. I also have to inject Insulin, but that really doesn't bother me. I try to budget my money effectively, though the food banks save me every month. We have no 'speaker's bureau' at my ASO. There is a support group, but it's on a night when I'm in school. These boards are my source of support for HIV and other issues. I don't know any other positive women in my town, as they all live in fear. I was very good friends with one years ago, who has since passed on. I deal with incompetent government agencies a lot (welfare etc.). I have permanent body changes that no gym would fix, trust me.
I think my saving grace is that I am in school. I won't ever be able to work full-time, but hopefully I'll be able to do something when I graduate with the degree. I think it's good that you are able to do what you do. Cherish it.
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Thank you for taking the time to share
AND certainly for POZitively Speaking
Wd
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Nice blog, Jeromy. It's a nice routine you have going there. I can imagine you singing those show tunes..
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As one mentioned in the aforementioned blob entry, I do believe it is my right to set the record straight about two points.
1. he is not (by any stretch of the imagination) quiet in the morning
2. I am a beast when awoken
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What, no breakfast? naughty boy. I cannot function without a belly full of Wheetbix.
And, man, you move quickly in the morning. I get up at 6 and only manage to hop into the shower at 7 - too many ciggies and coffees ;D. Out the door by about 7.30 but it takes me nearly 1 hour to walk to work (I just loathe public transport, especially in the morning).
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Stevie, I grab breakie at work. We have a full cafeteria that I take advantage of at breakfast and lunch.
And Iggy is a beast awaken against his will, not pretty at all. And as for the noise, I am quiet as a church mouse when I get up.
BT, thank you for the kind words,I try to do my part!
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I wake up by internal alarm at or near 7 am. Get up, pee walk to the kitchen and groggily make myself a bowl of cereal. I eat my cereal infront of the TV while watching the morning news. After I'm done eating I go fix my crazy morning hair with a hair drier.
Sneek back into my room and use a flash light to locate what I will wear that day. Sneak back out of the room and get dressed in the dining room LOL
I grab a couple of sodas and head out the door by 7:30ish to work. Its a short drive so I am there before 7:50.
I check to see if the elderly man I take care of has moved his car. I let myself into the his apartment, say hi to the dog. Look to see if he has fed the dog or used the leash to take the dog to pee. Check to see if the old guy has taken his meds properly. Taking my notes the entire time I put his dirty clothes in the hamper and set out clean ones. I set out his meds for the morning and prepare a baggie with his evening meds for the day. I check his phone to make sure he isn't calling anyone he isn't allowed to or received any calls.
<He is mentally ill and has had a problem with talking to very young prosititutes, who have taken advantage of him and abused him>
I take the dog down the three flights of stairs to pee and poop. <Most often the only time the dog gets to leave the apartment>
When I go back up I make sure Harold is awake and taking his meds and off to the dining hall to have breakfast.
I take care of any purchases needed for Harold ect. that and his doctors appointments are my only variations of my routine.
I go home and fart around with home stuff. Make dinner. Eat dinner. Take my meds. shower, go to bed and start all over. 7 days a week.
I skipped quite a bit of detail but you get the picture.
Wendy
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im only admitting this because you asked.
i wake up at 5 when i go to the gym. for the past 4 months my alarm has been going off at 615am. i hit the snooze button 5 times and then get up for work. i roll out of bed, put my feet on the wooden floor, and wonder if my feet have always ached or is it the hiv? i go to the kitchen, put a cup and a half of water on the stove for my oatmeal. while the water is boiling i either make my pb&j for lunch or i assemble an outfit for work. after the instant oats have been prepared, i iron my suit for work. to do this, i put on a porno, hold down the on button on my iron (the shit wont stay on), and press away. sometimes i will have music on in the background. next i shit, shower and shave (head & face). then i eat breakfast and head out the door (usually 15 or more minutes past my scheduled departure time).
i get to work between 8 and 9. at work i am surrounded by hundreds of hot blue collar workers. this is when i smile and thank the heavens for my wonderful job. i gather info from the right people, prepare for another conference call, then its off to see my clients. my work day is between 8-9 hours long. on mon & wed, after work i head to school. im in class from 6-10 and wonder what the fuck am i doing there. some tuesdays i go to my support group but lately i have been skipping that.
the weekends fluctuate with normal stuff, socializing with friends, shopping for food, or being a complete degenerate. oh, and there is the occasional quest for ass. cheers!!!!
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When Mini was small she was on some pretty crazy meds that literally controlled our lives. The only way we could keep up was by buying those pacifiers that you could put liquid meds in. Couple that with a chart that hung on our 'fridge, color coded stickers, and alarm watches. Then add to the mix 2 other babies - #1 who was 3yrs and #2 who was only 8 1/2mths when Mini was born. Sprinkle that with a hubby who worked 60hrs / week, and doctors who were 3 1/2 hours away. That was our life. A calm day looked something like this:
Wake up Mini in the wee hours of the morning for a bottle. Due to one of her meds, she couldn't "eat" 2hrs before or 2hrs after taking the med. Yeah, trying to tell your newborn she can't eat in the middle of the night anymore..it was thrilling. :-\ After she was fed, burped, and changed, she was given one of her meds. Then, she was put back down to sleep. Immediately, we took the sticker off of the med-pacie and put it on the chart. The med-paci was then filled with the medicine and a new sticker put on it with the time of her next dose written in black. Checking the chart for the dose time of her next med, the alarm watch was reset.
By then, #2 was awake. I cut up a piece of cooled off toast that I made while feeding Mini and put it on the tray of his highchair. While he was happily munching away, i made him Coco wheat with peanut butter. While that was cooling, I gathered up clothes and started a load of wash. Sometime shortly after, #1 woke up. After taking him potty, I sat him down with a cup of Carnation Instant Breakfast. #2 got his cocowheat and a sippy cup of formula. After breakfast, diapers got changed, laundry was put in the dryer, and the boys were off to play.
Time to wake Mini back up for her empty belly med. and her 1st breathing treatment. The sticker is stuck on the chart, the med-paci re-filled a new sticker engraved with the next med time was put on. Check the chart, reset the alarm watch. That done, she got a bath and a change of diaper and clothes. By this time, I got my glass of chocolate milk, banana, and fist-full of vitamins. I played with the boys a bit, worked on Mini's therapy, and down she went for another nap. Ok, 1st load of laundry washed and dried. Time to fold it and put it away. #2 is now up and ready to rock and roll. I'm just ready for a nap.
Wow! Where has the time gone? #2 is ready for his morning nap. But, only a second to breathe because...BEEP BEEP BEEP. Crap, 2hrs gone already - time for the next med. and her Bactrim and another bottle. Poor baby is starved by now. Acid reflux is a part of every feeding, so now we both need changed and while I'm at it, I may as well wash the sheets. Another load goes in. WHEW! Time for the boys to have lunch. Crap! forgot to redo the med-pacies i've used. Ok, everyone just hold on, gotta go catch up with things. Where was I? Oh, yeah, lunch. How's PB&J and apples? GOOD! You boys eat while sister gets another breathing treatment. NAP TIME!!! Everyone goes down.
Laundry into the dryer. Check the kids one more time. I lay on the couch and I'm almost asleep and RING..the telephone. It's hubby checking on the kids (what about me??). Ok, fine, kiss, kiss, yeah, me too, bye. Sleep again and RING..the social worker. Kids are fine, yeah come on over, what the heck..papers to sign..bye. Sleep at last - but not for long. #1 walks in for a cuddle. He has been neglected, hasn't he? Ok, come cuddle with mum for a bit. That lasts for half a second then he wants to play. Ok, how about playdough. #2 is now awake and joins in the fun. Mini soon follows. More meds. Refill med-paci. Reset alarm watch. Mini to the swing. Boys to snack. We'll indulge...here's some cookies and milk. YUM! Fold clothes, take something out for dinner. Daddy will be home to eat with us, so no cereal tonight.
Look around and decide to vacuum and clean the bathrooms since our worker will be coming for us to sign our intent to adopt #2. What the heck, it looks like a good time for a bath. I drag the swing in front of the bathroom door and fill the tub for the boys. All washed and cleaned and smelling good. Time for Mini to eat. This is her biggest meal, so it takes a little longer and #2 is getting restless for attention. Ok, bottle emptied, time to start supper. Supper is on the stove, how about we read a book. Everyone pick one and I'll read them both. I gather my boys and we read and read and read and BEEP BEEP. Alarm watch. Time for meds. Everything is refilled and reset. Down for her evening nap. Dinner is ready and hubby has called. He'll be late. Oh, well. Looks like it's the 3 of us again tonight. Hands and faces washed, kitchen cleaned, hubby's plate waiting for him to come home. Mini's awake and hungry. Time to eat and another breathing treatment.
Hubby's home and helps get the boys to bed. I'm worn out but try to hold up my end of the conversation. I think I need a bath - can't really remember when I last took one. And, I think I remember being thrown up on earlier. That was today, right? Last med before bed and topped off with a partial bottle so she'll sleep. Daily med chart is filled so we didnt' miss a dose - good. Take down that one down, put it in our folder and put up tomorrow's. I double check that all the med-pacies are filled for tomorrow and her middle of the night dose is on the night stand. Alarm watch and clock both set so we don't miss it. Check the boys, check Mini, kiss hubby goodnight. One more day down. For now, that's enough.
Mum
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Wow, mum. You are amazing. :-*
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Wow, I agree, you are good!!Not only can you do all that, you can remember it to write it down :)
I wouldn't have survived if the trip lets hadn't stayed in the hospital for the first 6 weeks. I Thank God for the nurses that gave them thier meds each day when I wasn't there.
Mini is truly blessed!!