April 2007 Archives

My very own personal negatives and positives of HIV and PML which I will post in both my BLOG and Forums.

Special thanks to cmhjeff (Jeff), Juan Carlos, Robert in Red Bluff, xyahka & RAB (at this time!)

Every person with HIV/ AIDS (and me with the PML) has a choice to either mentally give up or strive to improve our lot in life. Every one with HIV/ AIDS/ PML has the physical problems and setbacks to deal with throughout their illness. The individual’s battles with daily life are their own little obstacles, but I rarely see or know anyone giving up and just accepting their fate. I am absolutely amazed at people’s inner strength and continued enthusiasm for life.

So, I REFUSE to be held down for my desire to improve MY life by accomplishing what ambulatory and less handicapped people take for granted or those that are tunnel-visioned to only allow for their own suffering and wish their lack of determination on others. I cannot imagine my life if I had given up – I’d be dead or worse – living to die.

My biggest complaints of HIV/ PML – stomach-churning migraines every month, month-long constipation, and, oh, my wheelchair, are my weaknesses I need to deal with daily. I, myself, choose not to give in to every impediment that my day presents to my life and am very empathetic to what each person has to deal with what I read about or hear about. But, I am so full of admiration for these people when they realize they just need to shrug their shoulders and forge ahead.

After my diagnosis on November 5, 1999, within the next 3 months – I couldn’t walk, talk, write, cook, feed myself, bathe myself and even hated to sit up. And when I did lie down (which was 23 hours each day), I constantly felt like I was falling as the PML destroyed parts of my cerebellum. I had to have people move me, feed & cook for me, bathe me, help me go to the bathroom and even write for me because by this time, my signature had been reduced to a shaky “X.”

Fast forward to 2007. I have far exceeded any expectations of PML survival and continue to modify my life to circumvent the obstacles I still face. I am very aware that the HIV may cause heart, kidney or liver failure as time progresses, but I choose not to dwell on this information and have it rule my remaining time whether 1 more year or 20.

So, I have learned to feed myself, cook again and even clean house from a wheelchair.

I can shave, shower, brush my teeth and wipe my own butt again!

I can play with the dogs, sunbathe and do yard work – from my wheelchair.

Every day, I do 4 to 5 miles on my stationary bike, read aloud 6 pages from a book (currently a poetry book) and practice my handwriting 45 minutes by writing in Spanish or French. (I like being mentally active too)

Monday through Friday, I have a nice routine of parallel bars, Pilates & calisthenics, the Ab Lounger, the rolling walker and the free weight dumb bells – to keep up my tone, muscle, strength and fluidity. I don’t think I gave up. Hey, as long as I can – I plan to do it all.

I can sketch and paint again – slower now, but I am good! I am focusing on trying to be an author now – my new career direction – writing.

My newest goal – get my driver’s license back, buy a converted mini-van with hand controls so I can take my motorized wheelchair along and then…

I can shop whenever I want or need, go to a high school football game, go to a bazaar or flea market, road trips, go out to a restaurant or a concert or a show or just go for a drive.

With all my accomplishments and victories as well as everyone else’s – all I wish to say is one more thing to Simon – get a life and some intelligent thoughts about HIV.

HEY SIMON!!

IN REGARDS TO MY BLOG

I THINK YOU ARE A VERY INCONSIDERATE AND UNKNOWLEDGEABLE PERSON, HAVE YOU READ MY ENTIRE BLOG?

My life is affected by HIV and feel I have had A LOT to deal with for the past 7 – going on 8 – years and am deeply hurt by your comment.

Can you say – PROGESSIVE MULTIFOCAL LEUCOENCEPHALOPATHY?? Look it up. It has to be one of the worst results of AIDS/ HIV and now they have finally accepted its debilitating affects in cancer, MS and other diseases which end up destroying the immune system.

I drove for the last time the last week of October 1999 just before being diagnosed with the PML and was then told I would be lucky to live 6 months as every single part of my life was taken away. I lost my ability to walk, write, talk and even feed myself and when I survived past the 6 months, then I was told my life is gone as I knew it – my job, my car, my every day life. It took me more than a year to get motivated.

So I have had speech, water, physical and occupational therapies over the years and for the past 2 years have developed my very own daily routines of exercises and therapies – handwriting, reading aloud, riding a stationary bike, Pilates and calisthenics, parallel bars, etc, etc.

I remember being told 5 years ago that I would never ever drive – SO THIS IS A BIG DEAL FOR ME.

So before you further berate me – read my entire BLOG and look up PML (Progressive Multifocal Leucoencephalopathy) so you are informed.

HIV is part of my life, not my be all and end all – I refuse.

How dare you minimalise my life!!!

I have had 2 driving lessons so far, yesterday and then today (4/25) and enjoying every minute of it!

I have to re-train myself to use the hand control for the accelerator and brake for the left hand and the right is always on a rotating knob on the steering wheel which allows for nice, smooth or sharp turns. I spent the 2 hours yesterday and 2 hours today getting used to smoothly accelerating and braking. I did very little jerking either day and was so proud!

I did drive through a big park here, meandering up and down hills, learning to navigate curves and remaining in my lane. I did basic parking and reverse turns too, but no parallel parking yet – next time. Should be next week and even do a K-turn too! This third lesson will still be in the park still to make sure I have the feel of the car and practice parking more.

THEN, the instructor feels I should graduate to the country roads here with some of the lighter-traveled highways to further my re-education. He says that if I am still so comfortable and smooth after at least 2 days on the actual roads, then we will go on to city driving for a few trips and then mixing it up and as I improve then we’ll try the freeways and the more crazier traffic patterns. He wants to make sure I am very comfortable with the hand controls and drive almost without thinking about the hand controls like I used to drive with my legs and all.

I had my sister, Arlene, take me for the first lesson at the main office, but now, they will come right to the house to take me driving! VERY NICE!! Especially since getting someone to take me and be able to amuse themselves for 2 hours is far too much to expect of anyone!

The man who gives the handicap driving lessons also is a certified dealer for the converted mini-vans that I have been comparing – so he can convert any make I want – Toyota, Chevy, Pontiac, etc. Good to know! Because, as soon as I get my license back – I buy a new van!

I can excuse myself for being busy, which I have, but most of my in-attentive mood of late has its roots to my ex and his very taxing shenanigans. I told him that I had enough and to leave me alone. That was a week ago. It all seems so trivial compared to what Jonathan has gone through – puts my life in perspective and keeps my whining to a minimum.

I was truly excited to have my ex back in my life, even though everyone reminded me that he left me 7 years ago – probably because he thought I’d be dead in a few months. I swore that I would never forget that but I could understand part of why he did it, so I figured I could put it past me and we’d try again. To keep this saga short and sweet – I basically caught him in far too many discrepancies in regard to his life and he very quickly, and to me, very audaciously thought ‘”our” lives would go happily onward into the future, regardless of the past.

He touted himself to be an expert on HIV and of course my PML. Now, that really got my panties in a knot! In my last letter to him, I blasted his cavalier attitude with how I know the perils of HIV very well, but choose to keep living my life anyway and did not need his constant reminders. As for the PML, I told him he could never fully understand it and would never experience it as I did and do. I came back to the old standard of mine, “Where were you these past 7 years?” I re-iterated that most of the hard work has been done and obstacles met so he is supposed to sweep in and declare me acceptable now?

I told him how I guess he supposes I should be grateful and thrilled that he wanted me back. I wrote that I’d rather be alone, but that that isn’t going to happen either – I have been working on that already!!

He was also very adamant about the doctors and the therapy in much better there than here. I told him that I disagree. The doctors involved in PML in his area are no better than those I can see here. No one doctor will ever be able to say they know it all. Oh, the therapies – my insurance will cover only 60 up to 80 hours every year, no matter where I go. The center here is good, and they learn too as we go along – so they do try.

I think the main reason for pissing me off is his inability to accept the past and my current situation. He thinks everything is so easy. Enough, I told him. I won’t do this anymore – accept a life he THINKS we should have.

So, I have learned the past has made me more cautious, but I still go on. I am so angry with myself for looking toward the past – a past that no longer suits me. I think I have grown and learned to expand my vision and have learned that looking back isn’t always a good thing. Memories will always bring a smile to my face or a tear to my eye, but I do not wish to go back. What is done, is done – I cannot, nor wish to change my past. My future – whether long or short – awaits me.

One of my bigger goals of recent is beginning as of 4/24 – my first driving lessons with hand controls! It will be so phenomenal to get my driver’s license back – I hope! The freedom it will give back to me is mind boggling to me. I have truly forgotten the numerous activities I will be able to enjoy again. I'm anxious to start!

Life just may begin again for me!