To live or not to live with HIV/ AIDS/ PML - for Simon

[Ronald1958]

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.

[J.R.E.]

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.

Ron,

And this is exactly, what makes you a survivor !!

You know,.... I posted this once before, I'l repost it. These words are framed, on my doctors office wall. I read them everytinme I go there :


"A person who is fearless with a will to win,

To battle endless obstacles,

to be relentless in the struggle to survive, with an intense determination

to face the toughest opponent, and remain hopeful, is the definition,

of a true fighter."


Your a true fighter Ron !!!



Ray

[Ronald1958]

Ray,


Thanks and LOVE the quote!!!

Ron

[Nadine]

Ron,

You are certainly a fighter, don't let anyone bring you down! 

I speak to Jeff a lot and I know his goal is to also get behind the wheel again and I KNOW that the both of you will reach that goal. 

I knew nothing about PML before I met Jeff, but I've educated myself and have learned quite a bit.  I keep up on your blogs and I'm in awe of all your accomplisments.  I have to admit, the first thing I ever read about PML left me very sad, but seeing how you and Jeff have progressed leaves me with much hope. 

Keep on keeping on Ron!

(((((HUGS)))))