Ron's POZ Blog

I hate that word, retarded, and the fact that so many people still remain uneducated about PML (Progressive Multifocal Leucoencephalopathy) and its effects.  PML is a brain disorder caused by HIV and other immunosuppressant diseases which causes a host of physical infirmities that can include dexterity, walking, eyesight and voice, to name a few, and it can vary in severity from one individual to another.

I am writing this in response to anyone (particularly another PML-sufferer who had the sheer luck not to have a lot of bad symptoms)  thinking they are so much better and has never, EVER been belittled in life for one of their shortcomings whether physical or mental/ emotional.  Unless you claim to be 100% perfect, then you are my God and I will keep quiet.

There is nothing more demeaning that having a person talk loudly and slowly to you like that will help you understand them!!  And, to have the person think they have to bend down to be heard and understood!  (I am in a wheelchair) There is nothing wrong with me cognitively!  I can think more clearly, remember things, calculate and have my talents which more than likely; exceeds the jerk talking to me.  

And, I really love to hear how I or a colleague is not trying!!!  So, having a daily therapy and exercise routine that would do any gym or work out fanatic proud, for almost nine years means nothing to the unqualified idiot stating such generalizations.  Maybe, that person cannot empathize with any plight or affliction that they, themselves, are not personally coping with.  It would be a very hard lesson.

Wheelchair, or a cane, or a walker also does not equal stupid or lazy!  I do appreciate a door being held open for me or anyone struggling with the door because of a cane or walker.  I sometimes take an offer from a courteous stranger to reach up for something, although; many times I reach for it myself because I can stand from my wheelchair.  To me it is courtesy or being decent.  I appreciate any offer and if I am inclined to do something myself, I answer very politely, "No, thank you, but thanks for asking" and smile, which almost always is returned.

So why does any person feel the need to berate another human being?  All I need to ask is, "How perfect are YOU?"

Hello God

My newest counts are:  my T-cells are 869 and the viral load remains undetectable.  That is my highest T-cell count yet.  In April the T-cells were 696 and the viral load undetectable.

My dad passed on May 21 of this year, so needless to say I was a total mess until the second week of June.  Dad, I think knew his time was coming after his hospital visit the Sunday before he died, May 17.  He was very adamant about going home and happily left with me that day.  Dad even had me take him by a bridge construction sight (he was a welder all his working-life and worked on many bridges throughout PA, MD, VA, WV, NJ and NY too, I believe) and by his brother's house on the way home.   The next day, Dad had to stay with one of my sisters as he seemed to need help in his daily needs.  Dad just seemed to wither even more the next two days, refusing to eat or take his meds and by Wednesday we re-admitted him to the hospital fearing then worst.  Dad got increasingly worse and by Thursday morning, May 21, he was just quietly curled up in the bed acknowledging no-one.  I managed to rub his hand and my sisters talked to him as he slowly sank even lower and we worriedly called for a priest.  Within minutes of the priest's visit, Dad lay on his back and kept saying "Hiya" (as if he was greeting people), making the sign of the cross and stretching his arms out as if mimicking the Crucifixion and then, finally went peacefully as if he waited for the priest before he passed. 

I must have been to the cemetery to talk to Dad twenty times since.  I miss him a lot - more than I ever imagined.

I have to tell you this dream I had about two weeks ago.  Dad's hands were very arthritic and full of gout and looked so gnarled, misshapen and painful, but he never complained.  His only complaint was he had such a difficult time doing the simplest of daily tasks and he missed what he loved to do like gardening, canning and house work projects.  Ever since he passed, I kept saying to him in my prayers, "I hope your hands are fine now."

It was as if he answered me because in this dream, he was doing something with his hands and showed them to me, "My hands are getting better."  I have been only able to tell my sister, Renee.  But the emotion still was very vivid and I could not tell anyone else without choking up, so I haven't yet, out loud, that is.

Then to make my life even more unbearable, my mom was in and out of hospital for a few weeks with stomach and intestinal problems.  I was very upset with this happening so close to losing Dad.  Thank God, she is doing so much better now and hasn't been back to hospital since.  The new meds and diet are working and she has energy back to do things again.

I did do therapy again at the John Heinz Institute and told them I needed a "tune-up" since I was so bored with my at-home exercises and therapies which haven't changed much in the last seven years.  "Teach me something new," I said.  I really think they did help me a lot.  I learned new mat, parallel bars and exercise ball work outs to help my balance.  I have new wrist and finger exercises too.  I bought a Bosu ball to use with the parallel bars also to help with balance.  The Bosu ball is like half an exercise ball on a huge, plastic disk on the bottom with a lot of options.

I did attain a goal - to use the riding mower to cut the grass!  I enjoy doing it besides it is so much easier than the push mower I had to use as a child.  This is actually the first time in twenty-six years that I cut the lawn.  I figure, nine years of the PML damage, twelve years in NYC and five in Philadelphia.  Silly, how an insignificant chore can mean so much now.

I finally got a new motorized wheelchair - a Golden unit, a Compass - same dimensions and features as my old Jazzy, plus a few more very good ones.  This one runs quietly, no squeaks and smoothly.  I have had my old Jazzy from Pride for eight years now.    Over the past year, I have had two new units from Pride which only had problems like noises and squeaks which I had returned after a few days or weeks even, but the owner suggested this make/ model.  I am much happier with the Golden.

I finally had my book published on July 13 (my Mom's birthday!) and am working on a marketing strategy to get it noticed.  My book is named, More Than a Wheelchair, More Than HIV: Overcoming PML.    I have my own web site - www.ronkudrako.com which links to my own BLOG at www.ronkspml.blogspot.com and, I am excited the book can be found on Amazon.com and BarnesandNoble.com too.  With all this finalized except for the marketing, I am hoping I have more time now for my BLOGs and posts on various sites which I have been unintentionally neglected of late.  It'll be so good to read and participate on these sites again.  I'll be setting up profiles on My Space, Face Book, Twitter, etc soon also.

My sister, Arlene and her husband, Jim are building a new house very soon.  They are having the land cleared and prepared for the house.  The exact timeline I could not give.  It will be a log-style home - A-frame with a deck.

I guess my next update will be around the Holidays and will hopefully give you a lot of new information.

As always,

Ron

I had my appointment on April 22 and my T-cells went up to 696 from 652 and the viral load remains undetectable.  I had planned to write this past weekend but I ended up with a stomach virus which gave way to one of my migraines.  Needless to say, I was out of commission this weekend.  I finally got some motivation back Monday (4/27).  But, it figures, I had to get ill during a mini-heat wave.  It was 87, 88, 90, 92 and 86 on Friday, Saturday, Sunday, Monday and Tuesday.  It broke on Tuesday evening so it'll be a refreshing 65 today!

I started going to therapy again this year at John Heinz.  I did not do it last year so I am hoping for new motivation, new ideas and a kick in the ass!  I was getting so bored with my routine so I am hoping this spices it up a bit for me - so far - good ideas.  This time I am telling them that I want more balance and coordination exercises; strength is not my issue.  I told them I plan to use the riding lawn mower this year and would like to learn to do more of my daily tasks from my walker while standing.  We have been concentrating more on strengthening my lower back and giving more control to my "gas pedal" foot!  Next week, I am starting in the mock apartment to start things like getting things out of the refrigerator and cooking which is exciting - for me.  I have been adding a lot of new exercises to my routine which is excellent for my attitude!

I also had to get a new stationary bike last week.  The old bike was probably eight years old with at least eight thousand or more miles on it.  It started clanging.  The new one is VERY quiet.  I added ten-pound ankle weights when I ride because the resistance seems a bit easy even turned up to maximum.

Between John Heinz every Tuesday, Thursday and Friday and working on finding an agent for the book, I keep myself busy.  I finished writing and now it is focusing on mail and e-mail to various agencies and even small publishers.  When I have time, I delve back into art, but this time I am painting and decorating small, all kinds of shaped, boxes.  I like it a lot.

With spring arriving, I already exchanged my fall clothes for T-shirts and shorts (Thank God, I did that almost two weeks ago!)  I have been doing some weeding and hope to do edging around the trees and shed more this year - cuts down on the weeding too!  I also love it gets me out in the sun more - have to get my sun tan!

I have also made plans to go down New Hope, PA on May 21 - 24.  I hope the weather is nice!  New Hope is about 2.5 hours southeast of here on the Delaware River about an hour north of Philly.  It's a very artsy, small, pre-Revolutionary town that I used to lived near about twenty-five years ago back when I was in retail at Pomeroy's near Philly.  I am looking forward to seeing old places again and friends.

I have had one depressing day, well, more of wistful reminiscing when the two very large weeping willows were cut down from my mother's yard.  I don't know if others of my siblings remember the numerous components those trees played in our past.  From family picnics to sleeping out on summer nights to playing in its long, lawn-touching branches always made me smile.  They were my haven when I wanted to be alone and could sit almost hidden on the picnic table underneath the lush canopy - just to daydream...  I can remember climbing them and laugh when I think of how my father would jump down out of them during our begged-for evening hide and seek game so we could be delightfully frightened. (Of course, we always knew he would hide there, but we would squeal and run anyway!)

Oh well, my next appointment is in July and can only hope it continues to be well!

☼ WHEELCHAIR RAMP PLEASE DO NOT BLOCK

☼ - stands for the handicap symbol, you know, the one showing a wheelchair.

This subject may, or not pertain to any person afflicted with HIV/ AIDS or even PML, but it is something I have to deal with for now. I never used to concern myself with issues about the disabled, but then, PML. I have been driving for one year and seven months. I am so excited to be driving again. It remains a thrill for me, but has become routine for me now at times and presents me with a unique view of life, so I notice things now like parking, curbs, doors, bathrooms, etc. Just be happy if you can walk and do not have to deal with all of these disability rules and hurdles.

I got tired of people parking on the blue diagonal lines between some handicap parking spaces. It is designed that way to allow for extra room. The gap would normally allow me enough area to deploy the ramp from the right side and be able to get in the mini-van and drive. Unfortunately, some people with a handicap placard or plate feel they have a divine right to park on the blue lines to my right if they can maneuver in ignoring the “Van Accessible” signs. I cannot tell you how many times that I berated the unthinking culprits! And, their excuse is, “I was only quickly running in for a few things.” So, I guess that makes their rudeness okay.

When people do this, they prevent me any room to get into my van and it is extremely aggravating when I have perishable, frozen groceries! Finally, I was blocked in which was to be the last time and after arguing the stupidity of the act, was told about a company that might make me a sign for the door with the ramp.

I was not thrilled at the prospect of ruining pristine exterior of the mini-van but I was exasperated with the inconsiderate perpetrators always blocking the wheelchair ramp, so I went to the named manufacturer. The owners were aware of my concern and opted for clean block lettering along with the handicap symbol all in red sized to my approval on the right side access door.

I was hoping that this might help!

Before I go on, let me tell you that I usually try to park away from the marked handicap spots. I do this mainly for the reasons of rogue shopping carts and careless door openers.
I like to find two spaces that are a safe distance from the hubbub of the main entrance that border a curb or a shopping cart corral to the right which allows me the room to activate the ramp without worry.

Another motive is that I have a motorized wheelchair and do not feel that I need to park right by the doors. I feel sorry for the elderly and those who really have a difficult time walking. It makes me smirk when I see a seemingly very agile and sprightly person of any age in a beefy pickup or SUV using the spaces for handicap while an arthritic person of eighty or so with a cane has to park at farther distance in an unmarked spot.

That sight brings me to the issue of courtesy. I only see constant concern for the disabled in the elderly – like sixty-five and above. The middle-aged: it is still done with a smile by some and others with a wry sneer as if it is a forced imposition of politeness. Children, teenagers and twenty-something’s ignore any niceties or civility for the most part. A lot just see you as an inconsequential part of life that does not matter to them, but then there are those “youngsters” that surprise me to no end and when that happens, I make sure to thank and praise them.

All I think of is karma!

Many people are quick to offer opening doors or getting an item off a high shelf and usually they are over thirty. I tease people when they open both doors of a double-door entrance by asking them jokingly, “Do I look that fat?” I rarely have anyone reach for an item on an upper shelf. I thank them anyway and usually amaze them by standing up from my wheelchair to grab it myself. Cashiers are always quick to ask if I need help taking my few bags to the van or if the bags themselves are too heavy. I normally keep my shopping trips light needing only a few, easily handled bags. On the rare occasion that I go crazy and do need assistance, I am not afraid to ask.

Well, back to my sign on my mini-van’s door for the ramp. I was shopping for a few things one day recently and seeing it was not busy, I parked in a handicap space that had the blue diagonal lines between each spot. Mind you, it was not busy and this particular store had a large number of handicap parking places, so many were empty. I thought this would be an easy in and out shopping jaunt since I only needed to get two items. Fifteen minutes later, I was finished and on my way back to the van.

I could see this dark green car parked next to me on the right as I neared. It was confusing to me since so much handicap parking was available. I approached and noticed that this car had been parked haphazardly and was not squarely between the parallel lines, but about a third closer to my van taking up space on the diagonal blue lines. I could bring the ramp down, but it only allowed me about eighteen inches to navigate the turn to get on the ramp. I was disgusted! Obviously, they missed the three-inch high red lettering asking them please not to block the door! It cannot be missed since it faces the driver’s side when someone parks to my right.

I ended up having to back onto the ramp at an angle which the motorized wheelchair handled thankfully. But, I got hung-up as I turned to get on the ramp and needed an extra push to make it the rest of the way. I had no choice at this point, so I braced my leg on the door of the car to shove myself backward up the ramp. It worked!

The car was dark green, unwashed and therefore, covered by salt and grime. (It has been a snowy February here in Pennsylvania!) On the door, was a clean spot where I had placed my foot and a small concave impression from when I pushed myself back. Remorse? I had none because they should have parked better and could NOT have missed the red warning.

Why are some people so conceited that they fail to see how they affect the world?

I have decided to combine the aspects of an update with those of my BLOG which would give more insight as to why I have been so emotionally volatile lately and seemed so distant. I want family and friends to know why I have been so difficult since mid-October. I have earnestly begun to dig myself out of whatever doldrums I created for myself. A new attitude, right?

I am hoping this sample of my writing tells my friends and family about why I should be an author and why I have worked so hard on my book.

As of today (2/4/09) – my T-cells were 634 and viral load remains undetectable. I should have gone last week, but it snowed on that day I was supposed to go. October 1, 2008 – T-cells 853 and VL undetectable

Turning 50 this past November was not only a milestone for me, but heralded a period of self-pity with a lot of indifference that lasted from the end of October 2008 until recently. I had too many thoughts of, “what ifs” which further depressed me and made me make the horrible comment of that I should have been left in New York City back in 1999.

Even the good news of a phenomenal T-cell count with an undetectable viral load on 10/1/08 just made me even more melancholy and apathetic as my birthday approached because I remembered my past and the trials I had to face since November 1999. These memories were probably made more vivid since I began re-working the format of the book and had to re-live all those ups and downs.

A very sobering thought was that November 2009 would mark ten years of my diagnosis of HIV/AIDS/ PML and by the end of 2009 the loss of my walking. Ten years in a wheelchair is such a depressing thought and throw in the HIV – well, that is like being having a bucket of cold water thrown on you after just being saved from drowning. I was distraught over such a realization. I gave up doing a lot of my exercises and therapies in disgust when I thought, “what for?” I just kept up the stationary bike, handwriting and reading aloud though, so I did not feel like a total waste of all my work in the past nine years. I did stop writing in French and Spanish as I felt the need to embrace a more spiritual aspect of my life to try to overcome such sadness as I practiced my handwriting. I am hoping these tidbits of heartfelt assertions continue improving my demeanor.

Lack of relationships of any kind outside the family had me very angry I guess. I discovered most friends are becoming mere impersonal e-mail and card acquaintances – all because my life effectively changed in 1999 and I ceased to be a vital force affecting their lives. I have to take most of the blame because I felt I had nothing more to offer so I slunk to the back hoping to be unnoticed, and then more self-loathing for resenting them for getting on with their lives.

Ah, but the chance of new relationships have also left me bitter in ways too. I grew irate and tired when I realized that often I would be offered companionship but only out of their beliefs that I was desperate enough to settle for something that never I would have looked twice at before getting ill or, my favorite – having enough money to make me worthy of their attention. I used to get so angry, but now, I just remember that saying, “What goes around; comes around.” Karma. Whatever you put out there; it comes back to you. I really believe “it” has come back to me ten-fold. I was a foolish man before my illness.

Well, enough is enough, I say of my self-imposed sorrow. It is too draining to continue this wallowing in self-pity when I think of all that has been done for me. (Special shout-out to my sister Arlene!) It is a very enlightening thought when I realized the blame for my life is my own and that I, myself, need to deal with it all. So, I have begun rebuilding my exercise and therapy routine to “spice” it up for the future and felt the need to begin dieting too! I am reviewing my Pilates DVDs see if I can add new routines. I am using my big rolling walker to help me with more standing exercises – using my imagination. I am truly looking for ways to rev up my exercise and therapy routine.

I also have an appointment on 4/3/09 for “brain injury therapy” which I am extremely excited about. This is a lot of the same things they work on with stoke and accident victims. I am their first case of PML and they are eager to begin. I am hoping this gives me even more ideas!

I need to change on both the inside and outside and have to start somewhere. I have re-worked my book focusing more on the challenges I faced over the years. I plan to begin my mailing out inquiries in order to find an agent very soon.

Halloween was quiet for me and I was glad when Arlene and Jimmy were home for Thanksgiving. I did not need to cook – just OVER eat! Arlene and Jimmy did get a cockatoo which was to be for the truck but the bird was not raised as a traveler. Unfortunately, the bird died suddenly by an accidental need for them to brake hard.

Christmas snuck up on me rather quickly and although I decorated, baked cookies and bought gifts, my mood was not the usual gung-ho attitude. Under this façade, I remained in a wary mood of many things, even Christmas carols would set me off, so I did not listen to them. But, I did manage a new accomplishment – I addressed my Christmas card envelopes directly on them without the safety net of labels. I felt surer of my handwriting.

For New Year’s I had lobster – made a pig of myself!! I loved every bite though!

I did get a good laugh from Shiloh, the female dog. First, I need to preface this story by telling you every year I put my Christmas tree in the bay windows of my room but Shiloh likes to sit in these windows and watch everything especially any vehicles coming up the driveway. My bedroom faces the highway and offers the best view of the driveway. Shiloh is content to look out for hours and if she hears any noise, she quickly runs to look out the windows. With the tree up, it blocks the view from HER window, so I need to try to keep her from the window and knocking into the tree by creating barriers when I leave. I used my stationary bike and my folded up Ab Lounger to create a “V” one day which I thought would be effective. I guess my effort was not successful because when I came back home, the ornaments were off that section of the tree nearest the “V” and even the angel topper was hanging off to one side by its cord. I noticed that the Ab Lounger had been moved a bit which allowed her head to squeeze through. I just had to sigh and ask her, “What did you do?” She dutifully slunk away, but I could not even yell at her because it is her window when I think of it and the tree is in her way. I began laughing to myself when I pictured her trying to wedge her head into that small opening by thrashing back and forth, eyes closed, straining her neck - like the Great White shark footage you see when they try to get at the man in the cage! It’s humorous. So, that explains why the ornaments were off only from that spot.

Shiloh is happy the tree is gone and she has her full view back.

I am tired of winter and am looking forward to spring and sunshine soon!

November 7, 2008

This latest BLOG will be added to my reworked book as its ending.

It hit me like a ton of bricks this morning on November 6 just as I was slurping the last of my milk from my bowl of Cheerios ®, I’m turning FIFTY tomorrow! I almost choked on my mouthful of milk and then my eyes watered when so many memories hit simultaneously like cold water being thrown on me.

I never imagined that I’d see fifty back when I was in my deep and darkest depths of my PML/ AIDS/ HIV back in February 2000. Hell, I was surprised when I celebrated my forty-second birthday later that year.

I endured a difficult time over the past weekend thinking about my infamous anniversaries regarding HIV. On November 2, 1999, I was hospitalized and told I had full-blown AIDS and then on the third of November I might have PML. So, I think I was allowed feeling depressed and empty for those few days. And, like a trooper, I dusted myself off, wiped self-pity tears on my sleeve, took a deep breath and told myself to get over it. I have a future now and had nine more years of memories, both good and bad.

Honestly, I never expected to survive, never mind learn to overcome challenges and thrive. I was surprised even by my thought back when Sadie, my cocker spaniel, died on March 3, 2008 at fourteen years of age. I was sure she would have outlived me.

Sadie’s passing just really brought into focus all those that I had outlived over those nine years: Aunt Mary, my cousin Richard, a sister-in-law Leslie, a close family friend Ann, then her husband Jim, my step-mother Mary and other assorted family friends, young and old.

I hate when I think of the upcoming demise of my mother a father. It is a very real possibility now since June 2008 because my mom was diagnosed with inoperable kidney cancer and given one to five years. Then, my father has had maybe four episodes of congestive heart failure and the doctors say there is no more they can do. His lungs fill with fluid every few weeks it seems. He’s had angioplasty, catheters, open heart surgery over the last decade or so and now has a defibrillator. So, I get it. Wishing and praying; sometimes crying when I think about my impending loss.

The devastating thought that I will live a long life – alone. Well, lonely, because I have a big family. It isn’t the same for me when I look at my siblings with children or spouses and think how lucky they are that someone will be there when the do pass. Me? A sister, brother, niece or nephew just is not the same. I would hope I find my lover and we build OUR lives together. And when the time comes, we will have each other first and foremost.

On a better note, I am glad Obama won! Finally an intelligent, thoughtful and congenial man who has a chance to undo all the crap we had to endure the past eight years! It is a shame though that he has to fix this mess.

Well, I guess I will need to get a colonoscopy after tomorrow!

Somebody recently asked me what I was looking for in a lover. “Wow!” I thought to myself. I never really considered forming a list whether in my mind or on paper, but it has made me think about it a lot the past few days. What DO I want in a lover?

Other than the obvious – he must be sexually compatible to me first of all.

Then temper that sexuality with romance, passion and desire. Monogamy is a must because I would only hope we complete each other and we would only need each other. I know that may sound so provincial to some, but all those damned romantic books and movies end with a “Happily ever after” and I want that too. I only imagine good things when the story ends. I don’t imagine an unfaithful spouse, arguing or a divorce. Let me live in my vision of unending love!

Sexy is watching my lover: play with dogs and animals, playing with kids, enjoying even the simplest glorious things life can offer. And, the hands-down sexiest thing he can do is while he’s offering me his hand as we try something new and say “C’mon, try it with me. I promise to watch you.” So, he must like animals and children and enjoy being outdoors.

Sex, passion and desire all tie into romance, I think. To me, romance is sexy and almost always can be found in the smallest things without any effort. I think having coffee while reading the paper and touching my lover is sexy AND romantic. A light kiss or a hug for no reason is romantic. Sitting with my lover – listening to music or watching a film or just quietly – is romantic.

He should be intelligent about life’s lessons so not necessarily only book smart spouting theories and statistics.

Is it unrealistic to hope to find a man with a heart and compassion about my situation and a sense of adventure to try things with me again or be a willing partner in various outings? I would enjoy being with a man who was not embarrassed by the wheelchair and would be excited to go to a concert, play or movie with me. I only imagine what fun it might be to go shopping even. I could make a list of things I would want to do with a lover from high school football games to bazaars to restaurants.

I guess that being kind and sweet is a given.

Charming them and becoming part of my family are big pluses too.

I have my schedule of exercises and therapies and would expect him to be an active guy. I would love to have him help me at home or even take me to the gym to enhance my home routines once in awhile.

I prefer a man with a spiritual side. That would make me more comfortable knowing that he believes in a higher plan by a higher being.

There are so many little things that a man could do that would make my heart go flip-flop and keep me in love. I can only hope that I can find a man who never tires of little things and that I can keep him happy and smiling.

Dad and his Sour Cream

My father is eighty-one years-old and enjoys when we go out to dinner because he likes my company too. I am a good sounding board for his complaints about his neighbors and all his projects he has yet to do or the household chores he needs to complete.

So, we go out for dinner at 3:30 p.m., 4:00 if he’s in no particular hurry.

We talk about the usual things like the weather, our cars, relatives, etc. But he always amazes me that two simple projects can take up his entire day. A trip to the pharmacy and a doctor appointment can fill his day. Most of us run by the pharmacy to/ from the doctor and still have a major portion of the day to accomplish other things. If he has three things to do in a day, he’s harried and out of breath from “all the running.” My dad LOVES to take his time which means he enjoys chatting with his pharmacist or the doctor or anyone who will listen for that matter.

I should mention also that our dinners take up to two hours sometimes because he is too busy talking rather than eating.

Dad likes sour cream which he had for a baked potato. It came in that little tub with the main meal. Dad immediately put two teaspoons on his potato but then ate two more heaping spoonfuls like ice cream. He ended up with a small dollop on his chin which I pointed out and he said, “I’ll get it eventually!” and kept eating. Then fifteen minutes later, I could see him digging the remaining sour cream out onto his potato. He complained, “They never give enough sour cream!” I just balked and smiled as I told him that he shouldn’t have been eating it like he had a bottomless container; then he would have had enough for the potato. I told him that next time we will just need to ask for another extra portion so then he should have plenty.

We had a nice dinner and I enjoyed talking to Dad and the chuckle he gave me.

It brings tears to my eyes though because my father has a weakening heart and his time is limited. He has had open-heart surgeries, catheters, nitroglycerine pills and sprays over the years and recently - a defibrillator and now patches.

I have a hard time when I look at my frail eighty-one year-old father when he’s short of breath or having a hard time standing up straight. I cringe when I look at his misshapen fingers wracked with gout or arthritis. I hate the fact that no doctors seem to know for sure what it is attacking his fingers or how to treat them. I have very little faith in these so-called experts because - look at my situation. No-one really knew how to treat PML back then in 1999. I surprised many doctors just by surviving and then the rest when I was determined to thrive.

I look at him and remember the vibrant strong man who would adeptly show us how to do various things and play with us when we were children. From Hide-and-Seek, swimming and even weeding the garden he moved gracefully doing all his fatherly responsibilities going from one to the other effortlessly. My father was always an active man. He enjoyed doing projects around the house like remodeling and tackling any fix-it task. He liked yard work and gardening and was very proud of each new venture and did not hesitate to show us children the benefits of hard, but worthwhile effort, and when we saw the end result; we beamed at our success.

My father taught me a lot. I never realized how important it all was until now.

Looking for Love

I did not want to spend the rest of my life without a partner; be it years or even shorter than I hope my future to be.

I was tired of living vicariously through friends spouting tales of their latest conquest or conquests. Then, my parents’ health became such a personal issue for me at the end of June which motivated me even further. I looked at them, then my siblings and realized I do not have a spouse or children even, when I enter my waning years. I am sure that that thought gave my quest to find a lover even more urgency. I also had even more pressure when I got my last T-cell count of 853 – I just may have a long life after all.

So, I began where I could, and being mostly homebound, the Internet became my primary choice of initial contact. I was very focused on finding a man who would be worthy – well, not an asshole at the least. I did not limit myself to just one option – I went to the mall, various stores and restaurants too and will embellish those later.

I went to two old stand-bys on the Internet first, one of which is dedicated to HIV positive people and the other, probably the largest and most diverse. Diverse, yeah, that’s the best word to describe it. It has guys and girls of every persuasion and mainly geared to the twenty and thirty year-olds and sex fiends. I find that I have very little patience for their naivety, inhumanity and downright stupidity of some; not all. But, it makes you wonder what ARE they thinking? I made a few acquaintances with men on both sites who I knew were positive and those that never committed themselves to an answer. That they would choose not to disclose their status is fine with me in their profile, but I would think they would, or hope they did, when talking on the telephone or having lunch.

I did find another site by chatting with a guy and found this one a bit easier to connect with men. It had members that seemed much more mature mentally and skewed to an older group of men – forty to seventy mainly – “daddies.” I am in heaven because I prefer men to act like men – that is MY preference. So don’t berate me for my choice of the “31 Flavors.” Everyone is entitled to their own.

I think I hit pay dirt with this new site even though some guys remain egotistic assholes when they are too old to play games anymore. The site itself is not an HIV positive service but the members seem to be a very good mixture of both and so far, all have been understanding with only supportive comments. I am surprised yet though by how many list, “Let’s discuss” under safe sex but never mention HIV in their profile, but YOU know, right?

Over the past few months, I had felt almost emotionally forced to find a connection and in a way, began feeling like a “cyber-slut” whenever my chats went to sex. I hate to sound so hypocritical – I am a sex maniac in a prude’s clothing. I am apt to keep their attention with promises of wild sex but whenever I stray to another subject or show that there just may be more to me – silence. Call me a hopeless romantic, but I want it all. I think I am done with the hour-long relationship!

To give you an even wider idea on the depth of the deception of this method, I did meet one guy at a restaurant with high hopes. He knew about the wheelchair and my status (I am always very frank in my profiles) and when we finally met in person we had a lot in common – joked and laughed. Plus he was a handsome forty-seven year-old guy with a career and he told me I was handsome. So, I was confident about this one. I should have been wary of him when after meeting he said to me about there’s more to me and that he liked me; his original thoughts about me were wrong. So, I guess that meant I was more than a sex thing which meant personal work. But the relationship or whatever you wish to call it, fizzled out more as I wished to talk of other things than sex. Sadly, I don’t think he was looking to date and I was not looking for no-stings sex.

So, I added to my profile, “Just because I say ‘hello’, does not mean an instant marriage proposal.”

Another very adorable guy in his mid-thirties (that age makes me wince to be honest unless they can back up their mental stability and maturity with the right words) said he is a very spiritual man and has adapted his homosexuality to his religion. He is also positive. OK, I was intrigued by his spirituality and his look. Yet again though, the connection seemed sex was an underlying issue and the conversations waned. I felt as if he wanted to be rescued.

Not all guys I have met initially online in the area have been without note or substance. I have had wonderful lunches and phone calls with guys accepting of the wheelchair and my HIV status and also the fact I want to take things slow. I can count them as friends for a good laugh or someone to vent to without feeling obligated. I think that’s the best word – obligated. In a way, I am more of a prude now, more afraid of the entire intimacy thing; so I keep my distance and remain cool. I have to wonder though, “Am I being too cool or too worrisome about my HIV?”

One case in point involves a very nice man who felt that waiting was too aggravating, more so than the HIV thing. We had been very open about the entire issue being that he was negative. Again, maybe too open because a few weeks into our “relationship” he felt the need to date another negative guy AND tell me about it! It was almost as if he was throwing down a gauntlet. I kept calm and asked him he had been safe. His answer was basically that they did not have to be since they were both negative. I reminded him that telling a lie is easy and retorted, “I can’t do this again.” He was confused by my stance, so I explained that God forbid, if he gave him some STD, it would wreck havoc on my system and I was not about to allow that to happen. To bring you to the finale of this condensed soap opera – we went our own separate ways.

I can go on and on about the men I have met online the past few months: some are down right stupid and nasty (and younger) for no other reason than self-loathing; others are nothing more than mindless sex machines unconcerned with consequences; and then there are those that give me hope by just talking and being a friend.

Oh, and in other venues while I am shopping or eating in a restaurant: the men are all smiles and flirtatious while I am at the table or behind a rack until they see me in a wheelchair. I can almost see the “pfffftttt” as they run for the nearest exit. And those that talk to me, more or less, feel I need them – like I am desperate or helpless and they are doing me a favor; which is worse, I do not know. Those scavengers that haunt the men’s rooms see me as helpless and are surprised when I give them a look of disdain and wheel away with my head held high. To me, they are the desperate ones!

I think I may have a little bit more to deal with when guys back away from the wheelchair like they have seen a skunk. And to have them almost trip over their feet like the hapless, stammering victim in a slasher film trying to get away when I add HIV to the combination.

I am thoroughly amazed when talking to friends or even the men online about the bars, clubs or chat rooms – it seems not too many men are concerned with getting an STD. Maybe I am being overly sensitive now as my intelligence is ruling my libido now because of the HIV. I am so concerned when I hear of so much apathy about STDs and HIV by the “younger” set. But even the “should-know-better” guys act un-phased by risky behavior and seem not to care.

Silly me, I read too many romance novels when I was younger and still gravitate to those stories and movies with implausible love affairs!

I am nearing fifty and I still dream.

I had my doctor appointment, October 1, 2008 and I received wonderful news today. My T-cells were 853 – up from 498 in June and I remain undetectable in my viral load. 853 is my all-time high since being diagnosed almost nine years ago. The only disappointing news was my cholesterol went up and I have been given until December 22 to try to adjust my diet and see how that works before reverting to medicines. One particularly funny thing is that both doctors are hell-bent on making sure I get my colonoscopy and have a prostate exam – I have to remind them smiling, “I won’t be fifty for another month, so relax!”

I have had a very aggravating time with my new Jazzy so I returned it August 6. It was making like a “chirping” sound whenever it went forward since the middle of June. I tried to have it fixed but the company did a 180 degree turn in a matter of two weeks and told me basically it was my imagination and that sound is normal. I beg to differ. I have had a Jazzy since 2002 and it never made such a sound, so I finally gave up arguing with them and went directly to the manufacturer who sided with the distributor by just reading their report. The manufacturer is only ten miles from my home and they never sent a technician to even look over the unit. Needless to say, I got totally frustrated and returned the unit. Even the guy that came for it was confused as to why the technician said the noise was normal. When I told him that the first technician wanted to change a motor – he agreed. The company promised to reimburse my insurances which they finally did September 15. I am so aggravated from the entire situation and on top of that – the reimbursement was made but it takes forty-five days for it to show up in the system. As of now, I am using my original Jazzy which was refurbished back in April and so far it is running fine – knock on wood. I have to hope it continues to work until then. I cannot believe the circles of deception I have been through lately by the old Jazzy company, the new one and even the manufacturer. And, to top this entire situation further is the un-concern of my insurance to help. I have explained over and over that needing a power chair is my quality of life issue – I use it every waking hour to do my daily tasks and not just because I am too lazy to walk while shopping like so many so-called “disabled” people. I am so frustrated so, enough for now.

I have been re-doing the book since I sent queries out in 2007. Some suggestions were made regarding the format and I decided to try them and finish that process by October 1 which I did the day before! I will start sending queries out after November 1 which is my personal deadline to finish going over the book making adjustments. I have given myself all of October to get it ready.

I am totally into watching, True Blood on HBO. It is a very sexy show about vampires. It’s a good mix of everything but it interested me enough to order the Anne Rice books through Amazon. They will be my next books to read aloud. I guess I never outgrew my curiosity of the forbidden love thanks to Dark Shadows – remember that show? I guess I never overcame my obsession of sexy and romantic ghosts and vampires.

Arlene bought a new car – a red Pontiac Solstice. It is a gorgeous looking car and it is hers alone now. She hasn’t had her own car in years so this is her “toy.” It is a very sporty convertible and it’s something she’s always wanted.

I have rearranged my bedroom. I got rid of a free-standing shelf unit and my big clothes hamper to get rid of some clutter and giving me more room to move some things around. I have put my walker at the side of my bed which will give me easier access to it. I want to start using it during the day for simple walks to the love seat to write, read or watch TV. I am hoping it helps even more with my balance and walking. I think the whole power chair issue has made me wish to not rely it for everything and also I am cutting back some things (mainly outdoor projects) to keep it in working order.

I think I’ve discovered a new ailment like tennis elbow. How about Frisbee arm?? LOL
I noticed my arm is aching more and more but only if and when I throw the Frisbee for Shadow. It isn’t bad and I don’t plan to stop playing with the dogs but I think it is an amusing thought..

Ever since I won at the Pennsylvania Lottery with a decent amount – only four figures but I’m happy, I keep playing hoping for a replay of my win. So far, a bunch of free tickets, $4.00, $10.00 and even $25.00 – I’ll take it all because every little bit helps and I never know!

Well, the next update won’t be until after the Holidays so I am sure there will be a lot to write about: Halloween, Thanksgiving, Hannukah, Christmas and New Year. (I can’t believe the store have Christmas things out already!!)

Promise - more BLOGs to follow!!!!

Be well and hugs,

Ron