April 2006 Archives

I have to ask all of you a question, because my best friend and I were talking Friday. I wrote about this to another friend and thought you would have opinions on this too. (My best friend has been for 27 years now, but has the libido of a 20 yr old - and, is in an 'open relationship' - I don't get it. I always tell him if he was my lover - I'd kill him! {I'm old-fashioned}) We were discussing my situation and my best friend asked me what I missed most and I said 'hugging' then 'kissing for no reason at all'. He looked at me like I had 2 heads! He couldn't believe I didn't say 'sex'! I told him if sex is all I wanted, believe me, there are those that would fix that problem too, but then that would be all there is. They can't or wouldn't want to handle more. Am I being naive or overly romantic or stupid? Oh, well...

THINGS I MISS

I miss my voice the most. Since the one therapist here said my voice would never improve, I began reading books to myself to help with my diction and vocalization. I read all kinds of books as long as they interested me. My voice is getting better and I've learned to speak slowly so I pronounce the words correctly. I am more comfortable on the telephone now. I can carry on short conversations, but not my old sales pitches. I miss my long chats on the phone. I do miss singing to songs I like. I get sad and emotional when I hear a song I used to sing.
I do miss my career in wholesale sales. I can't make the telephone calls to follow-up my meetings. I can't travel to my accounts like I used to. I had to walk between different offices to handle different problems that came up. I can't make notes like I used to and I don't have the co-ordination in my hands I need to show a line or keep my files like I did. I miss flying around to the different retailers and looking out the window at the sights below. I miss sightseeing and shopping in the different cities. I miss the hotels and the restaurants in the different cities. I am sorry, but I miss my six figure salary. I hate that I collect from SSI in a month what I used to make in a week and a half. I miss not having to worry about rent, clothes, food, household knickknacks or new furniture, going out to a concert, play or restaurant.
I miss living in and going out to restaurants and shows in New York City. For work, I got to go to some of the best restaurants. I used to like trying different foods. Now, if I get nervous, my hands shake; I can't hold any eating utensils steady; I need to drink with a straw so no alcoholic beverages or cappuccinos. Elegant dining is a thing of the past.
I miss my handwriting and being able to draw well. I miss doing paintings and drawings. I even miss writing silly things like phone messages and grocery lists. Oh, I can write that stuff down, but it takes time and practice now.
Most of all, I do miss my times with my ex. He was not only intimate with me sexually; he also was intimate with me spiritually and intellectually. I miss our chats and fights. We rarely fought, but when we did, we were loud and never physical. He and I liked to make each other laugh or at the least smile during the day. He and I were always touching or kissing as we would pass one another - just because. I miss his camaraderie in projects for my apartment. He always helped me out. I miss our shopping trips for clothes or apartment things or food. I did like buying him clothes or his opinion on things for the apartment. I miss him holding me and hugging me, especially when we slept together. I miss holding hands. I miss kissing him and him kissing me when it meant something. Even while watching TV, I miss sitting next to him or having his head on my lap or my hand resting on his thigh. SIGH
Food shopping was even an intimate adventure for us. He and I would awake early on Saturday, so as to go to a farmer's market in NYC for fresh herbs and vegetables. Then off we'd go to an upscale food mall for fresh breads and meats. He liked to cook and we'd leave one another to cook specific dishes. Each of us would happily help the other in the preparation beforehand. I miss being able to cook and bake complicated dishes so easily.
I miss my apartment, because everything in it belonged to me. I liked my lighted wall unit with my china and crystal and a bunch of my knickknacks. I liked my vases, crystal candy dish and my ornate cocktail table. I miss my area rugs, my sofas and glass dining room table. I miss my brass candlesticks, baskets and plates. I even miss vacuuming, dusting and mopping - now I am thrilled to do any of them. Doing my dishes used to be a chore; now I look forward to it. Cleaning the bathroom was a horrendous necessity; now I'm glad I can clean the toilet and shower.
I regret I can't shop like I used to - no room for things I like or want: new comforters, sheets, towels, etc. New dishes and bowls for decoration. Table linens I'll never use now. More shirts than I'll ever wear. Funky ties and socks for dressing up in my suits and sport coats for work. Shoes - just because I like the style. I just can't get around to the stores myself - right now.
I hate the fact I can't drive an automobile. I always did love to drive, whether my own car or a rental on business trips. I just can't get in my car and go for a ride on a sunny day or go to the mall. I am working on getting my own mini-van this summer.
I miss going out with my friends to dance, drink or just to bullshit. I miss two-stepping and making out with a "cowboy". I hate having worked for over twenty years and ending up with nothing. I had to give it all away.

I miss so much of the simpler things in life:

No walking around.
No swimming.
No going to the beach.
No walking along the beach.
No more going out to clubs.
No more mindless flirting.
No more drinking.
No more dancing.
No roller skating.
No ice skating.
No more sleigh riding.
No more snowball fights.
No more impromptu visiting.
No singing.
No running.
No moonlit walks.
No more walks in the rain.
No more walks in the wind before a storm.

I get giddy when I accomplish any task that seemed unthinkable six years ago.

A FEW THINGS I HAD TO RE-LEARN...
LIKE ALL THOSE INCONSEQUENTIAL DAILY PERSONAL HYGIENE TASKS

* Shave using an electric razor, straight line, not circular - I don't have the co-ordination to use a regular razor either with shaving cream or the electric shaver that requires circular motions; I lack the dexterity and patience for such and my hand might tremble too!
* Undress for my shower.
* Manage to get into my shower to use my shower chair and a hand-held shower head.
* Soap up and rinse.
* Shampoo my hair.
* Dry myself off and get out of the shower.
* Comb my hair; put on deodorant and Q-tip my ears (five years ago, I probably would have jammed the whole thing in my ear when my arm would have jerked).
* I put on a cologne (I have at least five different scents) and then redress myself.
* Tie my shoes. Sneakers if it's warm; my work boots if it's cold and I plan to go out side. In the summer, I adore slip-on sneakers and flip-flops!
* Brush my teeth - I use an electric toothbrush now, since I lack the controlled motion needed to use a manual toothbrush. But, I do use a mouthwash too!

AND FROM MY WHEELCHAIR, I HAVE ADAPTED TO BE ABLE TO ACCOMPLISH SO MUCH

I am sure many people hate shoveling snow. Me, I enjoy it now, because I can do it. First though, I push the snow away from the door on the deck either by using a broom or a shovel to clear a square yard approximately and spread some rock salt so that my Jazzy has traction. I bundle up and head out the door with my handy hand-held rock salt spreader, do a tight 360 degree turn to close the door behind me. The shovel and the broom are always leaning near the door and easily accessible. I clean off the deck first, scattering rock salt as I go, before tackling the ramp. I clean the ramp by sections, spreading rock salt before I go on to the next inclined section. After I finish the deck and ramp, I let Shadow and Shiloh, the dogs, out to play in the snow. They play as I shovel the short concrete walkway and the patio below the deck. It is a task I do from my Jazzy and many family members and friends are amazed at my ingenuity and drive. So, I learned to do things like shoveling snow from my wheelchair.

I enjoy going outdoors with Shadow and Shiloh when the weather is good. I really like the spring, summer and early autumn days that are warm, but not humid, with a light breeze. I have gotten better at throwing a Frisbee for Shadow. He loves to jump and catch it in mid-air and brings it right back to me to throw it over and over until the slobber makes it too slippery to throw. It is hard to believe four years ago, I barely threw a Frisbee very far and it would fly off in all directions. And, Shiloh, even with bad hips has me tossing her flattened footballs for her to fetch. I never could manage to throw a ball four years ago either. I do not throw far, maybe twenty feet or so, but my aim is much improved. So, simple things like playing catch with the dog means a lot to me and it gladdens my soul to be able to accomplish things like that. Repetition does help.

I enjoy raking in the yard to get ready for spring. I manage to always pitch in as long as the yard is not too wet. I have my work gloves too for such projects. I work slowly from my wheelchair completing a small section at a time before moving on to the adjoining section.

I can bake cakes, cookies, pies and breads now. I have the control in my hands and arms to do this task now. I always liked cooking and baking. What I have to do, I measure all the ingredients first, so everything is handy and ready. I read the recipe first and "categorize" all the ingredients - like the dry ingredients: flour, baking powder, salt and spices together for example. So as I follow the recipe, I can add these "categories" in steps to complete the task: cream the sugar and butter, get the eggs ready, etc. I now can manage the mixer easily and even pouring the batter. My wrists and hands now have the control to easily prepare anything. I have always enjoyed cooking too and like making everything from pasta to chicken soup to stews to pancakes.

I can run the vacuum cleaner in my bedroom, the living room and dining room from a wheelchair, but when I do it, I maybe slower and go by sections than most people. And, I can even use the upright rug shampooer when it is needed. Not a big deal for anyone who can stand and move on two legs, but for me a continued success that I have accomplished three years ago and continue to vacuum every other day.

I also can do the dusting throughout the house. I can use my Jazzy to stand up to hold on a sturdy counter or put my walker in front, so I can dust the top shelves of any bookcase, wall unit or shelf unit in any room. I can easily do table tops and knickknacks. I can polish kitchen cabinets, wipe the top of the refrigerator and clean every counter. I manage to do mirrors and windows too!

I even enjoy the mundane chore of having to do laundry. I can manage to stand at the washer or the dryer to set the dials or add any laundry product needed. When the clothes are done, I can fold them or put them on hangers if needed.

I wash, dry and put away all the dishes, flatware, pans and pots I use during the day from my wheelchair. My hands, wrists and arms have gotten a lot of their coordination back and my movements are controlled and smooth.
I have gotten a majority of the control and dexterity in my hands to be able to draw and paint again. I enjoy everything artistic in nature from interior design to arranging flowers.

Still, I miss the hugs

I guess my Easter miracle is that I am able to do so many of the chores and the preparations for the holiday that I never could have done 6 years ago, even 3 years ago.

I really never thought about it much, but I began mulling it over and the reality of it all came to me as I reviewed my weekend.

I do not know how much you know about PML. PML destroyed my balance, my coordination, my speech, my handwriting, the artistic talents in my hands. By February 2000, I was bedridden or wheelchair-bound. I barely spoke (croaked). I did not write, draw or type. I was satisfied staying in bed all day. I probably remained inanimate until the summer of 2000 when it dawned on me, I was getting better. Over the following years my counts kept climbing and my viral dropped to undetectable. Right now my T-cells range from 550 to 650 and my VL has remained undetectable for the past 3 1/2 years.

I would have to say I got into my rehabilitation after being at an in-patient rehab center in September 2001 for 2 weeks. (My check-in date was 9/11 - I will never, ever forget.) So, since then in 2001, during 2002, 2003, 2004, 2005, and now into 2006, I constantly tried all kinds of rehabilitation and therapy. I had to develop my own regimen to adapt to what I learned and pushing my own limitations as time marched forward from September 2001. I have a very good daily routine of exercise and therapies I do every day by adapting and building on things I have learned at rehab, suggestions from people here on AIDSMeds.com, friends’ support and my own imagination. I am willing to try anything, I guess, just in hope of recovering some day. I do things every day now, without even thinking. I just do them as a subconscious act, but with modifications for being in a chair and because I CAN.

My Easter weekend:

On Saturday, April 15, I did my bike for 4 miles, my French writing and read a few poems by Shakespeare aloud first. Then, I decided to bake a carrot cake for dessert on Easter after dinner. I have the control in my hands and arms to do this task now. I always liked cooking and baking. What I have to do is, I measure all the ingredients first, so everything is handy and ready. I read the recipe first and "categorize" the ingredients - like the flour, baking powder, salt and spices together for example. So as I follow the recipe, I can add these "categories" in the correct steps to complete the task. I can manage the mixer and even pouring the batter. My wrists and hands now have the control to easily put things into and then take out from an oven. Yep, all done from my wheelchair!

After I finished baking the cake and had to leave it cool, I ran the vacuum cleaner in my bedroom, the living room and dining room. I did it from a wheelchair, but I did it, maybe slower and by sections than most people. Not a big deal for anyone who can stand and move on 2 legs, but for me a continued success that I have accomplished 3 years ago and continue to do every other day.

I did my bed next. I have gotten talented at putting on fresh sheets knowing how to go from the wheelchair to the bed and back to put on the fitted sheet. Then, placing the Jazzy with my legs near the side of my bed, I stand bracing my legs back against the Jazzy with the bed in front in cased my balance wobbles, I toss the flat sheet up to get it to lay good enough so I can fix it and tuck in the bottom. Pillow cases - easy, then my bedspread and I am done with that task

It is warm Saturday already. The high is supposed to get to 75. It is sunny and a warm breeze. I have to go out for a bit. I love taking the dogs out to play. Shadow loves to play Frisbee and Shiloh loves to play fetch with old deflated footballs. Shadow and Shiloh are 2 white shepherds, 90 and 100 pounds, male and the female respectively. 3 years ago, I started with the Frisbee and could manage a decent 20 feet. Shadow loves to jump and get the Frisbee, then brings it right back for you to toss it again. He will do this over and over, never tiring it seems, but my arm does or the Frisbee gets too slobbery for me to throw it. Well, this year, I can throw it 40 to 50 feet and always where I aim it. So, Shadow is in doggie heaven. And, Shiloh has gotten into bringing me the balls for me to toss. I guess she sees the attention I pay Shadow and wants in too! I was absolutely horrible with throwing balls until a year ago. I can throw a decent 30 feet now, but underhanded! Ha Ha We usually spent 30 to 45 minutes playing each time and on a nice day – we play 2 or 3 times as the day allows.

Next, I had lunch.

The cake cooled down nicely, so I frosted it and even put swirls into the icing!

I boiled the yams a day early since I would be making candied yams for Easter. Now, you have to think of how now I can manage a water and yam-filled pot to a stove! My wrists, arms and hands are strong enough to move the pot from the sink to the stove rather steadily. To be fair, the sink is separated to the stove by a 2' counter, so it is an easy movement, but maybe 2 years ago, I would shake so badly, the water would have flown out all over. I even drained them later!!

I then spent some time typing some E-mails and worked on my book more and even took a break to play Ms. Pac Man for a lot of the afternoon.

After dinner, I peeled and got the candied yams prepared and put the dish into the refrigerator for Easter. One less thing to do and all I needed to do was put it in the oven with the ham on Easter Day.

Easter Day

I prepared the ham. Cloves, honey and brown sugar - Mmm Put the ham in and then my candied yams. I would spend the time until everything was done by playing with the dogs, typing, some art or playing Ms. Pac Man again. A free day for me - an entire day devoted to "nothing." When my mother had arrived, I had set the table and was ready. I managed to go to cupboards, stand by the counter and get the dishes or glasses I would need and then took them to the table.

Dinner went well. I even cut the ham with an electric knife! All in all, a nice dinner. After dinner, I washed, dried and put away all those dishes, pans and flatware - by myself.

I never would have thought I would be thrilled to be able to do everyday chores or routines, but I am. Even 4 years ago, I would have had a hard time doing these things that now I do without thinking. A person's inner strength and beliefs really do make a difference. I realized recently I am not one to give up no matter what crap comes my way and tries setting me back. I think I hear, "I Will Survive." Ha Ha

A couple of things happened to me when I last wrote. Here is the most noteworthy.

I had a horrible situation with someone who might have worked out in a future relationship as I wrote in a previous entry. I was so disillusioned with so many aspects of my romantic life, so delved into HIV+ dating and chat sites. Big mistake! I was too raw and could easily be mislead.

I was contacted by a man out of the blue who said he really liked my drive and determination and would love to chat. I agreed to chat and found he had all the right opinions and requirements that I looked for in a lover. He told me that my being in a wheelchair and my limitations did not bother him. He liked the fact that I was always trying new things and pushing my limitations. Later, I pulled up his profile. OK, slap me hard! His photograph excited me with his looks and his physical description had me thinking I had hit pay dirt. He wrote a wonderful heart felt personality and what gets his attention. OK, I was too easy in accepting everything he wrote. But, we exchanged E-mails and phone numbers and the letters and phone calls were always nice. Well, shortly thereafter, I became confused with some of the things he said which conflicted with previous letters and phone calls. Having a low bullshit tolerance, I confronted him on these points. Of course, I was embarrassed at being so gullible and told him off. I felt better, but DAMN I felt so stupid afterward and wondered when I would ever learn. AND, on the Internet yet! (I slap my forehead and roll my eyes)

Hey, I guess that is what it may always be for me, a hopeless romantic.

About 3 weeks ago, I also was requested to do a revision on my first written work by a literary agent's suggestions. I have been doing that and spending a lot of time working on it and really had little time for anything else. Honestly, the last thing I wanted to do was type! LOL This week, I finished much of the cutting and adding, with bits and pieces to work on in a more relaxed pace. I was given until May 1 to finish my revisions, so I now will have a much easier tempo to follow.

So, between the work on the manuscript and my emotional crap of the past few weeks, I have just been a mess here!

But, I always shrug my shoulders, shake off any emotional setbacks and get to the task at hand. I do hope this more relaxed schedule gets me back to my old routine very soon and so that I can entertain with some thoughts and musings!