July 2007 Archives

I am still as giddy as a kid with a new toy! I have been driving around and doing my own errands the past 10 days and have been loving every minute of it. I also have been going on mini road trips on those days that I have no errand to run so that I practice my driving and get used to the mini-van. I am such a stickler to be good at driving. So, I have to make sure all my turns, my curves, my brakes and accelerations are smooth before I am comfortable with passengers. I really would like to be good!

I did get to a local Mall here and did window shopping along with a few buys at Macy’s and a local chocolatier (yeah, I needed it!)

I managed to go to a Wal-mart, a K-mart and a supermarket too! Nothing of any note; just odds and ends.

I even went to church with my father. I met him there. I am not a big fan of any organized religion and the entire experience made me not wish to return any time soon – again. I am a firm believer in the personal needs of an individual’s spiritual health mean very much more than going to a building full of once-a-week hypocrites. I tried; for my father’s sake. If anything, we discuss it now.

I did get to a few drive-thrus – Burger King, Mc Donald’s and Dunkin Donuts (a frozen strawberry/ citrus drink – no donuts!) too. I am not going to go crazy on fast food; definitely not every day – I promise! Salads and yogurt at home to compensate for any food indiscretion. I figure, once a week when I go shopping on Tuesdays.

I have re-worked my weekly schedule to accommodate a day of shopping (my sister, Janet, is a shopping maven and has told me what day is best!) on Tuesday.

EXERCISE SCHEDULE AS OF JULY 2007

I start my day at 5:45 am, ready things for my shower, shave and then coffee and by 6:00, I read aloud 4 to 6 pages before I shower. After which, I have a second cup of coffee with breakfast and then do my handwriting practice by 7:15 (one day – Spanish; next day – French), so then by 8 am, I can do my stationary bike for 3 miles (M-W-F) and 4 (on Sa- Su-Tu-Th). On M-W-F, I do the Ab Lounger following the bike for 150 reps. I finish by 9:30. But still, by 11:00 on M-W-Th-F-Sa, I do my balancing and free-walking with the parallel bars for at least 30 to 45 minutes.

LUNCH

At 1:00 pm, I do 100 to 200 feet with my rolling walker where 90% of the time – I do not use the brakes so my stroll is much smoother and natural. I keep my weight on my hips and legs without relying so much on my arms. I also am very aware of “rolling” my feet as I walk. Between 15 and 20 minutes.

Then by 2:00 – I do my calisthenics and Pilates for about 45 minutes.

At 4:00, I do the free-weight dumb bells for 20 minutes for my arms and wrists.

DINNER

And then I am totally free to go for a drive or do errands until 8 or so…

Between 9:30 and 11:00 am and from about 11:45 am to 1:00 pm; from about 1:30 pm to 2:00 and 2:45 to 4:00 – are my free times and I decided to do more of the household chores during then, my writing or drawing, play with dogs, etc.

Tuesday will be my shopping day with only my reading, handwriting and the bike BEFORE 9:00 am – so I can go.

Sunday, again, will be another Tuesday with early morning therapies and that’s it for the day, so it’s my free day to do what I please.

I go in Friday, 7/27, to the rehab center near here to sign up for water therapy. It is a great help for my balance with walking so I am looking forward to it.

It’s just SO nice to pick up and go whenever I feel like it again. Tomorrow, 7/24, is my first full day of shopping for groceries and odds and ends and I think; I am going to love it!

And, by the way, in case a virgin of HIV reads this – this IS because of HIV/ AIDS/ PML –my struggle, my daily therapies and exercises (which I MUST do) and my recent victory….

I got my new mini-van on Thursday, July 12!

I couldn’t believe I did it, but deep down, I knew I HAD to – for myself, and for all those numerous “experts” that said I’d never be able to drive. Oh, yeah, they are the same ones that said I’d die in 6 months. And then as my T-cells went to 200, they said that’s it and MAYBE, another 2 years then. Well, it will be my 8 year anniversary of being diagnosed with PML/ AIDS/ HIV on November 5, 2007; my T-cells are at 743 and my viral load had been undetectable since July 2001 with only a slight blip back in April 2007 which it went to 200. In June 2007, it went back to undetectable – so I very happy.

I have to tell you though that when I was driving back to the house, on my own, in my very own vehicle on Thursday, I had to pull over, because the tears in my eyes made it so hard to see the road. I ended up balling like a baby for about 10 minutes, because the relief of making this plateau just hit me and all the possibilities I dreamt about washed over me. All the “little” things that I can do now – by myself – no scheduling or pleading my case….to anyone.

So here’s the new mini-van front and back (my gold mist baby):

The driver’s seat is automatic, going up and down, forwards and back and turns to the side. I can transfer from the Jazzy to the seat very easily then after I back it into the van through the automatic sliding door and ramp. And, voilá, I am in position to drive.

I think the hand controls on my van are much easier to get used to. I try to drive a little every day to make sure I practice so that I make turns, do curves, accelerate and brake smoothly. I am doing well, but am anal when it comes to being better at anything! Determination.

This shows where the ramp is, but I need to take a better one showing the ramp and where the Jazzy goes.

The next day when I drove, I went through a drive-thru. My first driving through one in 7 ½ years! Burger King never tasted so good!! I continued trying to master “smooth” driving and did well – I’m pleased. I haven’t taken any passengers yet because I figure I need some time to myself to get acquainted with my new wheels. On Sunday, July 15, I am planning a small road trip through mostly rural, curvy 2-lane roads that will end up in a more urban street setting. A little of everything so I get used to the controls. Next weekend, I am planning my first grocery shopping trip and promised to go to church with my dad – ahhhhh! Just so you know, I am not a big fan of organized religion, but it’ll make him happy and then afterward, we’ll go eat.

Well, there’s a new world for me to experience now, so, off I go! (I plan to keep all my therapy and exercise schedule, and cleaning, and the dogs….HA HA HA)

Happy Independence Day all you Americans (U.S.)!

My very own Independence Day is going to be July 11 – when I get my mini-van with all the groovy doo-dads I need for “disabled” drivers. (Thanks to my HIV induced PML, in case anyone forgot!) I’ll be able to take my Jazzy (power chair) which will allow me to do a lot of things I cannot do on my own right now.

I went through the Pennsylvania Assistive Technology Foundation which helped me get a loan with only a fixed 4% interest instead of the 8.99% up to 14.24% and a 7 year payment plan instead of the usual 4 or 5. So, this isn’t a “gift.”

My mind is swimming with so many possibilities once I have my wheels. My biggest things are being able to go shopping (grocery, personal, pharmacy and even window shopping) when I want and being able to go to my doctors or dentist without an entourage.

I have to admit to be totally honest, I am not sure how I will react when, especially somebody who hmm’d and haw’d whenever I asked to be taken somewhere, asks me for a ride. I had to schedule my doctor’s and dentist’s appointments MONTHS in advance and BEG to be taken to grocery stores. Better yet still, I had to call around to see who was able to pick up my meds when I needed them. Before you tell me I am whining, look at a map of Pennsylvania and look at where “Falls” sits in the northeast corner (15 miles NW of Scranton and 17 miles NNW of Wilkes-Barre). Falls is a small, rural town of , maybe, 3000 people on one highway (and a 2 to 3 lane-er – nothing major). It is at least 7 or 8 miles in either direction to hit any type of grocery store, fast food spot or even bank. To be fair, I do have a gas station with a mini-mart 2 miles away – but the prices – YIKES!

Enough belly-aching….

A few of the things I am looking forward to also and have noted are:

1 – I want to go to my old high school’s home football games. I haven’t seen one in 30 years because I lived away for so many years and when I did visit; I didn’t have the time. Well, since I was dragged back to my hometown 7 years ago, I eventually fell back into following local football again with major focus on my alma mater and its main rivalries. I have asked an old high school chum (who ironically is a teacher now) to take me to a game and get as many of our group together. Great, a bunch of 47, 48 and 49 year-olds trying to re-capture youth!

2 – I want to go to street fairs, church picnics and firehouse bazaars again. Granted, I will not be able to go on rides, but the food and the game booths!! I already know all the big ones coming up in August and September like the Pittston Tomato Festival, the Scranton Italian Festival, and the Bloomsburg Fair, to name a few. I can taste the pizza and potato pancakes even now!

3 – I look forward to being able to go to a restaurant again. The idea of being able to go out is such a giddy thought. I’ll be more than happy with Bennigan’s, TGI Friday’s, Olive Garden, Red Lobster, Lone Star or even Chi Chi’s for casual eating. But, I look forward to being able to go to the so-called “real” restaurants – I wonder where all my neckties and sport coats are?? Besides, I haven’t had good fried calamari since I left NYC seven years ago.

4 – I’ll be able to go to movies or concerts or artistic events.

5 – I will be able to go to the rehab center here on my own now without having to wait for their van’s schedule to open up – water therapy!!!!!

6 - I cannot wait to be able to do a decent road trip again! First, will be New Hope, PA, northeast of Philadelphia, when I get used to driving again. The area is more rural, so it’ll be an easier drive for my first road trip. A lot of friends live in the area from when I worked and lived near Philly 20 years ago!! After I get more comfortable driving and more skilled, I plan to visit my best friend on Staten Island and then both of us head to Manhattan. I would love to re-visit my old stomping grounds (that are wheelchair accessible) like the clubs, restaurants, shops, stores, museums, etc. Ooh, Broadway shows!

Family and friends have also been reminding me of things I will be able to do like:

- going to the casinos! I LOVE the $1 slots, always have. We have a horse track here about 15 miles and slots are legal. For more, I can always head to Atlantic City for Blackjack!
- Drive-thrus at Mc Donald’s, Burger King, Dairy Queen, Arby’s, KFC – Mmm, Mmm, Mmm! I’ll definitely be having a lot of salads and yogurt home though.
- As long as gas stays reasonable; joy rides or spending a day at the lake or park AND taking the dogs with me.
- A good friend here wants us to go to clubs (of all the better clubs here – no steps are in my way) and joked if someone pisses us off, I can just run over their foot with the Jazzy!

I am also working on getting a new Jazzy (power chair) through Medicare which is possible since I am allowed a new one every 5 years. The one I have now has a lot of creaks and is definitely well-worn and used. So, I need to have a physical and have my doctor write a script to the dealer to submit to Medicare for a new one. My Jazzy turn 5 on July 11, 2007 – the day I supposed to have my mini-van. I am definitely looking at the updated version of the Jazzy I have now.

Another comment to me, which really raises the hair on my neck or my blood pressure, is “now, with the van, don’t slack off on your walking exercises.” I have tried to make sure that when I tell anyone about the van, I reiterate my commitment to my goal of walking and what daily therapies, exercises I do and the little victories I manage. I do not plan on it. Insert my laughter here.
Once again, I just want to say that, even though I rarely comment, I read the BLOGs and the Forums nearly every day and many hit my heart and a few make me chuckle. And, yes, I can even read Juan Carlos’ BLOG in Spanish!!