February 2006 Archives

Well, today I am feeling good about myself. Another sense of accomplishment for me.

I ate long spaghetti today for lunch. It may not be much or may sound so trivial and silly to many people, but does anyone know how great it feels to be able to twirl spaghetti on a fork after 6 years? The intricacy of the movement of being able to twirl a fork is an accomplishment for me; one heralding possible normalcy. I am very glad this opportunity has made me feel so much better! I thought for sure I would be required to eat rigatoni, ziti or some form of easily handled pasta. I would never complain about having to eat any kind of pasta. It is one of my favorites!

This week has been full of ups and downs and the act of being able to enjoy spaghetti again makes another high point for me to relish.

My brother-in-law, my sister's husband that I house sit and live with has lost his sister Monday. So, my sister and I have been very supportive and understanding to him, especially since what I had put my family through years before. His sister was 43. I cannot handle when such a young person dies. I never could. I would have definitely had an anxiety attack, if I went to the memorial Friday. Older, I can handle, but not my age. I guess that will change as I enter my 50s and 60s and so on, God willing. I cannot imagine losing one of my siblings or even my parents. My parents are nearing 80 and I know it is inevitable, but I do not want to even think about it! My siblings too. The oldest is now 57; the youngest 31. I have 4 brothers and 4 sisters and cannot fathom them passing. What hurts the most is when I think of what my siblings and parents thought I might die in 1999 and what they might have felt. My mother never wavered in her faith that I would survive and all of my family helped and encouraged me too. Here I am.

Another up for the week, is my third brother, 40 years old, told the family that his wife is pregnant. The "up"being when they married 9 years ago, the doctors said they could not have any children. Well, 9 years later, a miracle and everything with the pregnancy is fine too.

I did have one big "down" this week personally. I thought someone who might be a longtime love relationship (some day) came here to visit last week. So many extraneous forces came into play and slowly deflated my balloon that held my dreams of love. For one, he showed up here with his dog, unannounced. I was never told he would be bringing the dog. I have 2 here - white shepherds, 90 and 100 pounds. They are extremely jealous and guarded when it comes to me. Even though his dog is sweet, well behaved and house broken, I felt on edge every time my 2 here would lowly growl. They would never hurt her, but I did not want to find out. Strike One.

Strike Two. Even though I made it clear that falling in love takes time, he was sure I would just pick up and go with him to begin our life together after 3 days! I would never do anything like that to my family, well so abruptly. I am not so easy and volitile. And, all my insurances, doctors and benefits would be gone if I were to move. This is something to consider after months not days and even then A LOT of paperwork to switch and move everything. No matter how many times I explained my situation and the problems it would incur, he kept insisting on a rose-colored future. His apartment is on the second floor and I am in a wheelchair! No handicap bathroom either, uh uh. No, I will not take steps back in hopes everything works out. I kept thinking that he must think I am so very desperate to be in a relationship. Again, ummm no. I do not give into desperation and REALLY despise men that think I am.

Strike Three, You’re Out! I like a man who is well-groomed and takes care of himself. I like scuffy every now and then, but recent. Ripening is not MY idea of sexy! I like men to be men, not prissy, but not skanky. He bordered on skanky and felt he did not need to change or shower. I am not a prude, but, "Hey!" Scruffy to me means a guy did not shave in a few days, because he was busy. But, he had time to shower. Scruffy is very sexy when a man just gets back from the gym without showering there or yard work or from the job.

Well, by the time my bells tolled the demise of this relationship, my brother-in-law and my sister flew home for my brother-in-law's sister imminent passing. This became my excuse to end the visit early and get him on the road and get my life back to its level serenity and normalcy. Oh, well. Another one and another time, I hope.

I am hoping that everyone can see how far I have come since having Progressive Multifocal Leucoencephalopathy - PML in Nov 99. I would never ever intentionally or mean to minimalize anybody’s battles with HIV. I was just reminded recently of just how far I have come. I am not trying to pat myself on my back, but only wish to remind people that there is hope with a little bit of determination. I just am amazed at myself for doing all this - from a wheelchair!

I am only posting the pictures of my room, because 6 years ago it had a twin hospital bed w/ rails, now I have a Craftmatic full size; a hospital tray on wheels, now a short shelf unit for my plants; a portable potty chair, gone now for 4 years. I use my own fully equipped handicap bathroom now. I had to be given showers; now I take showers. I lay in bed for the first year in a t-shirt and shorts, rarely sitting up - only to eat or poop! I did not write, type, draw or exercise then either. Now, I fully dress everyday and I have a full day of exercises and therapies; I write every day - using French and Spanish to amuse me and it is also good for my brain; I type almost every day; I like doing everyday house chores like dusting, cleaning or cooking. I did not go out for maybe 3 years; now I sun bathe (with sun block!), go shopping, do yard work where and when I can, play with the dogs - Frisbee and ball, clean snow off the deck and walk, have a veggie garden - and all from my motorized wheelchair. I had to be fed by someone in the beginning, then my sister cooked for me. Now, I cook and bake anything I can for myself or family and friends - carrot cake, Christmas cookies, pumpkin pies, spaghetti, stews, soups, etc., etc. I had to be watched all day for the first 3 years by family, friends or a nurse. I could not be left alone to fend for myself. Now, my sister and her husband have their own freight company and are gone for at least 4 weeks at a time. I LOVE my independence and quiet-time! My mother and a brother live on either side, so if I need anything - I just need to telephone. I could not even fathom being artistic again even a few years ago. Now, I doodle pretty well with thanks even to the intricacy of my handwriting practice. I will never be as good as I was, but I can hope. I paint a bit - good, but not like I did either. I am always trying anything that might allow me to be artistic and give me enjoyment at the completion of the task. I think I have done quite well for myself being such a helpless lump of something-resembling-a-human-being 6 years ago.

The top photo shows 2 of the Country-Western paintings I did about 8 years ago, aren’t I artistic? Recently, I re-matted them on denim after cutting them out. It also shows 5 of the 8 cowboy hats (L - R) brown, black (top), silver gray (bottom), then on the right top - white and below that - straw.

The bottom photo really shows my shelves to the left of the bay windows and my right nightstand. My nightstand has a 3' glass and wrought iron vase w/ an arrangement of dried wheat and colored long grass. My favorite photo of the 2 dogs is next to it. The shelves show on the top - my left speaker, my brass hourglass and my "Dream Tree" - my first home purchase, probably 23 years old now. The middle shelf has my crystal cross, my Infant of Prague statue and a little Fatima statue. The bottom shelf has my 2 Japanese urns, a peach colored votive and photos of my favorite sunset and sunrise - top one, Muir Beach, north of San Francisco (my first Pacific sunset) and the bottom is a sunrise over the mountains surrounding Las Vegas.

In the left photo is the 3rd painting I did maybe 8 years ago. I re-matted it also on denim - still a Country-Western theme on another wall in my room.

In the right photo is my large pine shelf unit. On the top shelf is my Stephen King's collection, "The Tower" and a painting I did 9 years ago re-matted on denim. The second shelf are a blue and white urn, a photo with my best friend and another of me and my sister, Arlene as toddlers in the gold frame. Third shelf has my blue and silver clock, a rhinestone framed photo of my grand-niece and grand-nephew, a votive candle, another votive in a glass, rhinestone and wrought-iron holder and a miniature collectible guitar. On the fourth shelf are my gold and silver crucifix in a box now lined in denim (my room's accent fabric), some palms, a small gold and silver free-standing cross and then my Playstation 2. On the fifth is my silver tea set. And on the sixth (not shown) is just for my CD storage binders

The left photo is showing my TV and stereo with a multi-color vase with a eucalyptus arrangement on the left, my Tiffany butterfly lamp and another votive on top of the TV. 3 of my 8 cowboy hats hang above the TV (L to R) - cream, olive and then black. To the right of the TV is a floor standing mirror.

The right photo is of a small teak tiered table I keep near the window. In the window is one of my two stained glass cross sun catchers. On the table - the top shelf are photos of my maternal great grandparents, second - a friend and her children in NY, third - a glass dish with 12 glass mini-eggs.

Left photo shows my short shelf cart I have by the bay windows for sun for my plants. I have some cacti too! A little Mexican hat souvenir and A Texas thermometer souvenir.
The second shelf has my large glass pedestal bowl with denim in it for now. For Easter, I will fill it with 6 painted ceramic eggs and 12 painted wooden ones. To the right is my denim cap souvenir from Puerto Rico and another plant. The bottom shelf has 2 votives and finally my ivy which is now 19 years old! The ivy was given to when I left buying and moved to NYC.

Right photo is of the shelves on the right of the bay windows. The top shelf has my silver basket filled with sugared fruit, my right stereo speaker and a Lucite cube with a Psanky egg in it - a gift given to me 20 years ago by a Ukrainian co-worker. The middle shelf has (L to R) a small photo of my dog, Sadie in an ivory ceramic frame, my wood and ivory crucifix, a mini urn votive and finally my candle urn with cut outs. The bottom shelf has (L to R) - my natural sponge vase with some silk flowers, a small canister of shells, 4 free-standing shells and then my large sea shell display. (I explain further in next photo!)

My sea shell display

I did this using some artistic talent. I used a swirled glass platter to start, filled it with white, aqua and blue sand in swirls to mimic the Caribbean. I added my shells (maybe 30) then filled in the spaces with glass chunks of blue, lime and clear. I had this maybe 10 years and re-do the display twice a year.

A stupid and funny dog stunt today

Well, I laugh now, but I could have killed Shiloh, the female white shepherd, this morning!

She went on one of her jaunts this morning and was gone gallivanting for 30 minutes. Shiloh sometimes goes on visits to the neighbor's dogs. I didn't think anything of it, UNTIL she came back.

Her nose, face and paws were black from her digging in a burn pile. I am guessing she was rooting for food at one of the neighbors. I FEED HER! AND TREATS GALORE TOO! She looked like one of those old-time black face actors from long ago that is so politically incorrect nowadays and only meant to give a mental picture of this white shepherd with black soot all over her. I apologize for this example, but it best decribes her. Well, I yelled, "What did you do?", so she slunk in and put her head down pressing against my legs in front of the Jazzy. Every time I yell at either dog, they put their heads down up against my legs to beg forgiveness. (It does melt my heart!) Shiloh got black soot all over my sleeping pants and socks. I yelled at her and told her she was a bad girl as I slapped the paper in my hand - I think that scared her! I could never hit her and plus I haven't the coordination! I'm afraid of her hips and all anyway. Shadow, the male, ran to the corner with his head buried in the dog toy pile! HE HE

Well, I calmed down and I had to use some of the blueing dog shampoo in the kitchen sink and tried washing Shiloh as best I could. 10 minutes later and 15 wash cloth attempts, her face came out pretty good, but tinged gray now.

Shiloh knows I am mad and has tried buttering me up all day. She even has taken to sighs of dispair at my indifference to her today. It is killing me, but she needs to remember NEVER to do that again! Even Shadow has been attentive!

I laugh now, but I could have killed her this morning!

Since January 1, 2006, I have had terrible back pain for 3 weeks. So, I did very little exercising or therapies for those 3 weeks. I could not even sit to type very long or even practice my handwriting! Needless to say, my typing (E-mails and my BLOG) and my writing (my Spanish and French) suffered too. I took my tree and decorations down in my bedroom after Orthodox Christmas as our tradition to my father's Ukrainian upbringing with a brother's help. (I have a very large bedroom in my sister's house - also serves as my private living room too when they are home from their work travels. Once a month, she and her husband come for 3 days - I guess I am their "house sitter" and baby sit their two dogs too - HA HA ) I did not even "put back together" my bedroom as usual after Christmas - no cleaning or rearranging. Finally the week of January 22, 2006, I improved enough to only do the stationary bike every day for 2 miles. I felt so useless and lazy those previous 3 weeks. I have not been used to lying around for the past 4 years. The first 2 years of my bout with PML really limited me and now I enjoy my independence. I hate when I am unable to do my daily exercise and therapy routine and my daily house chores like dusting, etc. I get very listless and edgy I was anxious to restart my daily routines, because I really was feeling "unhealthy" by not doing these things. Since I began my 2 miles on the bike and my back fared no worse. I felt better since I felt like I accomplished something, anything. My attitude also improved. So, the week of January 29, 2006, I started 3 miles on my bike every day and my arm and finger exercises. Last weekend, I also rearranged and cleaned my room finally. YEAH

This week, I had planned and did 4 miles on my bike and start basic standing exercises on the parallel bars to start getting back to my routine and my hobbies.

So, now my back is feeling much better and I have begun to use my short-lived free time to keep myself busy. I have begun reorganizing all my CDs and DVDs into storage binders. It will free up a lot of space on my media shelves. I plan to use them more for all the books I have read over the past 3 years. It has been fun going through the CDs and DVDs and reminiscing as I try to categorize them. Listening to some of the CDs that I have not heard in ages brought back many forgotten memories. Revamping my media shelves was brought on by having to buy new speakers and CD player.

My stereo was acting up for months. My CD player went belly up and my speaker were humming and crackling. I decided to buy a new CD player and speakers and started to save money just for that purpose. I got my new equipment and am so thrilled by the sound and the ability to play my CDs again. My old speakers were floor models from 1987 and when we took off the front panel, loads of black curly shavings fell to the floor. I guess they really had dry-rotted!! Anyway, I am enjoying my stereo again, but it has evoked many memories.

I listened to Disco from the 70s, Dance from the 80s and 90s, Salsa, and Country. I got sad when I thought about dancing at the clubs in Wilkes-Barre/ Scranton, Philadelphia and New Hope. I could not wait to go dancing back then. In NYC, I danced to all kinds of Dance music sometimes on top of the huge boxes set up as mini-stages on the floor at a famous night club. Remember twirling fans or a groovy fabric to be cool? I do - HA HA One of my lovers was Puerto Rican is a great Salsa and Meringue dancer, so he taught me and we would go to a Spanish club to dance. In my business, I traveled quite a bit to Texas, Oklahoma and Arkansas. So, in the late 90s, I became enamored of Country music and "cowboys." I fell madly in love with a very hunky and handsome Tex-Mex cowboy in Dallas. (He looks like Brad Paisley - that's why Brad's my favorite Country crooner now.) He loved to 2-step, square dance and every other country dance and liked me to dance with him. He taught me many dances, but any slow-dance with my "cowboy" to a Country ballad was my favorite dance. Sing. I loved to sing. I was good, but not near the range you would ever need to make it. American Idol I am not!

Enter PML (Progressive Multifocal Leucoencephalopathy) in November 1999. Well, if you do not know what it is - it caused by a virus (possibly) when/ if your T-cells go under 50. Mine were 10. I lost my coordination, balance, speech and fine motor skills when it hit me hard. Over the past 6 years, I work every day on all of them with determination to get all of it back some day. I now do all my daily routines from a wheelchair now. My near future goals are to walk again and get my driver's license back. Who knows? Dancing may follow. So, in my mind, I can imagine myself doing the Salsa, a 2-step or any of the dances from the clubs. And, hope for the day I can do all of it again.

A friend of mine near Philadelphia reminds me I will have to 2-step with him when I improve. I promised him.

I went shopping at a craft store to get things for my Country Western paintings. I did 5 all together. All in multi mediums on vellum in black, white and shades of gray. I have re-matted all of them on denim. And I cut them out too, to focus on the persons in the paintings before I matted them. I think the denim definitely ties into the whole "Country" theme. I like them so much better now. I was going to include them as visual aids, but I will put them in a BLOG in a few weeks. My digital camera is acting up, so I am sending it to be fixed.

It does seem things are acting up or quitting on me a lot lately and some new projects beg for attention, but I just fix, re-do or take it easy until it is correct or back to normal. I hope everything gets on track for me, so I feel as if I am handling and enjoying my life again. Being unable to be active has given me far too much time to think and/ or wallow. I do not like being morose and am so glad to be on my very busy, very tight, but enjoyable daily routine.