Archive for March, 2010
I’ve been away from writing for a few days simply because Monday is Brian’s 21st birthday! It’s soo hard to believe that milestone is upon us after all he and I have been through.
I have to admit I’m a little more than miffed at him, I needed to use the scanner he had in his room, but because he made way for his new bank of monitors, he just pitched it!!! Can you believe it? Now when I needed it most of all, I haven’t got it to finish the project I started for him, UGGGGH, KIDS!!
But, I’m glad I have the opportunity to be upset with him…considering what odds he was given when he was young. Unless you’re a parent, you’re less likely to know what I mean.
Anyway, plans are that Monday, March 29th, dinner will be at 5pm at Bahama Breeze, a favorite eatery of his. He plans on wearing board shorts. LOL His best friend DJ and his parents will have dinner with us. Sunday night, Brian wants to go to the casinos at the stroke of midnight to make his first legal wager. LOL Gregg took off work so we could all be there for that. It’s funny, he’s not a gambler, but he just wants to do something that’s been surpressed from him until now since booze and smoking are not his vices. I just don’t want it to turn into a problem. I trust him that it won’t. If I haven’t raised him right until now, it’s too late to start! LOL
On another note, I cleaned the bunny cage this morning and Candi was in rare form. She was upset she didn’t get back in the cage where Skittles was while I was cleaning and started running all over the place darting in and out from under the furniture and running under our bed in the bedroom. (I think it’s her way of protesting or it could be that she was looking for Skittles in desparation!) She really looks like a dustmop without a handle right now. I haven’t cut her skirt off for spring and when she runs she looks like the dustmop is moving on it’s own. She’s just too comical for words. I so love our bunnies, they make me laugh. Some of their antics are belly-laughing funny! I’ll be cutting her “skirt” off for the summer, I’ve been harvesting her angora to take to the lady who spins. She’s going to make yarn out of her fur for me so I can knit something for Brian’s first baby. But I want Gregg’s sister to see Candi like that. She and her husband will be visiting in May. So right after Mary leaves then I shear her to get her a little cooler for the summer. They don’t go out, but it’s still a little cooler for her without so much hair.
I’m going to post more writings that pertain to my book in the next week, but I first have to get past Brian’s birthday. I can’t tell you what all we got him yet but I will soon.
THE WINDOW ON THE RIGHT
The sticky, black metal grates covering the large, institutional size windows in the kitchen were covered thick with grease and dust. My son had just fallen asleep after a long, active day and I was ready for the few quiet moments at the table with my cup of hot tea.
That window was both my protection and my torment. the grates gave me a sense of security eventhough I was on the fifth floor. I was sent away with my son for protection until the trial. Over time, it became my friend.
Looking through those grates to the streets below, I saw many things I’d never seen. some things I never wanted to see, and some things I just never took the time to see. It was almost a week after our arrival before I felt comfortable enough to explore outside the parameters of our assigned room. As I slowly fit into the routine at the safehouse, I spent more time in the areas used to socialize. The kitched at my house was always my favorite place. I used to sit at my table and, in the early morning hours, just after daybreak, I’d take in the beauty of a new golden sun rising. The freshness of the morning air, and the sounds of animals and birds breaking that morning silence would give me my inner peace to continue just one more day. So it seemed natural that if I was hoping to find some semblance of contact with the world, the kitchen might be that place in our new environment.
I positioned myself at the small table nearest the window to the right of me so I could look down at the street below. The building we were in was situated on a corner and the street that crossed it looked similar to a cleaned-up alley. Many nights would go by watching red taillights disappear into the vanishing point, while a new set positioned themselves, waiting for the light to turn green.
It was cold when we first arrived and that winter was as unforgiving as any I’ve seen. It was a picture I’ll never forget. Sitting at my seat at the table, I could see the largest, silver-dollar-sized snowflakes glistening in the streetlights, falling to the still untracked ground below. It was 4 a.m., another sleepless night since the news of another trial delay. Sometimes I’d curse the grates on that window; they held me back from doing so much, from living the way I wanted to. But I knew without them, I may not have a life to lead. My estranged husband, in a desparate attempt to rid me from his life, threatened to kill Brian and I. Especially when he found out Brian was a special needs child. I’d concede for the time. If ever there was a time I needed to look at life at arm’s length, it was then and the window somehow kept me in touch.
Through that window I learned to tell time to the Westminster Chimes that floated their beautiful sound across the street from a very old church. It seemed to look warm and friendly with its three spires and ornate filigree on the rim, just below its steep-pitched roof.
It was there I saw a white man who worked for a utility comany walk over to a black woman sitting in her car with the hood up. Then I saw him pull his truck around to the front of her car and with jumper cables in hand, hooked the two vehicles together. He unhooked them, and looking our her window said something to the man as she was driving away. I bet they never imagined anyone noticed that bit of kindness.
I saw a love affair carry on from the public parking lot next to the old church. I often wondered why they both drove, kissing in the lot, then each walking their separate ways. At quitting time, he’d clean the snow off her car and wait till she arrived. They’d talk for a few minutes, sometimes in his car, I gathered to wait for hers to warm up. When they were ready to leave, he’d hold her to him and kiss her longer. They always drove off in different direction. I think I’d have like to know more about that story.
I watched winter give way to spring and because of more trial delays, spring became summer. They say that the heat of summer brings out the worst in people; to this I can attest. The safehouse was at maximum capacity, having twenty-five people; twelve mothers with eleven children from ages eighteen months to sixteen years and two house mothers. The staff was turning requests away at the rate of two per day; simply, they couldn’t handle any more.
It was one of those sultry, hot, July nights, just days before my case finally came to trial. I was at my window. I wasn’t looking at anything in particular, just thinking how hot it was, when across the parking lot in the alley-street below, I saw in the shadow of the streetlights, a woman appear by a black, parked car. I saw the driver get out and go around the back of the car. The next thing I heard was a bottle breaking. I saw the man lift it over his head and come down with it hitting the car. The girl moved out of the way but the man grabbed her and she started screaming. Then, the guy pinned her up against the car and started choking her. I thought, “My God, he’s going to kill her!”
I flashed back to a similar scene in my recent past and remembered why I was at the safehouse. I thought I should do something, or call the police, but as I watched, half paralyzed, I saw the two embrace, he opened the car door for her and they drove off. That’s one story I’m not soure I’d want to know more about.
My trial came and went, and I was able to move back to my hometown. My son and I got a small house in a rundown neighborhood, settling in just in time to go back to school. We were very busy getting back into a regular routine.
Our days were filled with school and fixing up the place a bit and playing; paying attention to my son. The nights were busy doing homework at my father’s desk I brought over from my mom’s. I’d sit for hours at this desk hoping to make sense of stacks of books. It had been some twenty years since I’d really opened a book to study and I doubted I could do this again. As I contemplated this question I looked out the window on the right to my car in my driveway below.
I never thought much about that window, until one sleepless night I was at my desk in the dark room looking out. In the beam of a haolgen security light atttached to my neighbor’s garage, I could see the largest silver-dollar-sized snowflakes falling onto an already silent blanket of fresh white. I reached to the window to pull it up and listen to the quiet and realized that less than one short year ago I couldn’t open a window because of the grates. Yes, I’m doing the right thing. From now on none of my windows will have to have grates on them.
Better living through more powerful drugs….NICE! Yeah, buddy! The drugs the doc gave me have been really working, but not without the downside of ichy, watery eyes and sneezing and coughing…but they seemed to have hastened the pace at which I am getting well. Yay me!
I went to look at a couple of houses today…there’s one that’s for sale or rent to own…I’m waiting for a call back from the owner. It’s in a nice older neighborhood which is what I wanted…no HOAs to deal with…our HOA here terrorized me for almost 11 months about my handicapped plackard which was still valid until 2o12 but because it was from Ohio they kept threatening to tow my car and have it impounded. I wasn’t doing anything illegal but because they didn’t understand the handicapped laws their ignorance continually badgered me until someone cut open the convertible top to the Mustang and stole the handicap plackard out of it. HOAs are insaine! I now know more about federal handicapped law than I ever thought I’d have to. I’m done with HOAs.
I can hardly wait to move. It’ll be nice to walk outside and have coffee in the morning or a cool drink in the evening like I used to on my back deck in Ohio. It’s the small things that count with me. I want to be able to grow some roses and tend to some plants the way I’ve always done. I’m so ready for this. Change is good, life shouldn’t be stagnant!
I have to go to the grocery store either later today or tomorrow. It’s a bummer when you have to wait for someone else to go with you because you can’t lift half the stuff you need to buy. I’m thinking I’ll be dependent like that for a while longer.
Now I know why I don’t use drugs to a very large extent….so when I get them they will work, quickly! I’ve taken two rounds of the antibiotics and the bronchodialator (sp). WOW! That’s all I gotta say! It had kicked my butt all the way to next week….which is when I feel I can get out of bed….it sounds like…..well, you really don’t want me to go into details! LOL At some point in your lives you’ve all been sick so I don’t really need to go there. I was up until 3 this morning and got back up at 7 so I”m due for a nap right now.
I’m usually up raring to go by now but I think I’m going back to bed. I had my first solid meal in two days this morning…oatmeal with chopped peaches and some almonds, no sugar, with water. it’s only like 390 calories when it’s done like that….I’m turned the fan on above our bed so that should cool me down with this fever.
The doctor told me to tell the guys that if they’re sick next time they should come see him because he doesn’t want to try and get me well before my surgery. After thinking about it, it really is selfish on another’s part if they don’t go to the doctor when they’re sick…for the sake of the people they live with….why didn’t I think of that?
Skittles and Candi are hopping around here and can’t figure out why I have them in bed with me so much…it’s cause I can’t play with them the way I usually do. I can hardly wait till this stuff is cleared up enough to get back to my activities.
I’m good to lay down now, ttyl.
Dr. Sparling, my GP, had a surprise this morning when he saw me….I’m sick as a dawg! I got this “epizutic” (my mother-in-law’s word for anything not yet diagnosed) and he was really cool about it. He gave me a breathing treatment and some extra meds to clear it up in my lungs and an inhailer. The treatment worked and am going in a little while to get the scripts for the other parts.
As we talked, it became clear to me I was doing the right thing with my back. He was aamused that his one friend said I was deformed, was appalled that one doctor wanted to rip my back completely open and was relieved to know what the last doctor said, and the treatment he proposed.
All in all a good visit to him since all my lab work came back lower and out of the abnormal ranges in some areas. I told him I’d do my part if he told me what to do and I’d help myself if he’d help me. It works for us and he’s really pleased…I can’t ask for more than that.
I’m feeling really confident about the decision to do the back surgery. HOWEVER, I told Gregg this morning I will not get it done until we move. I don’t feel that is too much to ask from him since I’ve stood by him through ALL of his mistakes. He needs to step up and make this right for me.
I’ve put a lot of thought into this step in my life and I know it’s going to take every ounce of positive input to overcome the odds and heal the way a 30 year old would. I told Dr. Smith I would committ to whatever he assigned me to get to the other side of this healing with a positive outcome. I want to wear high heels to my class reunion. AND if I can’t ever water ski again, at the very least I want to be able to swim the front crawl. I told him I’d be willing to make that compromise but the heels were non-negotiable! He laughed. (I wasn’t kidding!) And I told him I was putting a timeframe around it all….August 1, 2011 is my goal to be completely well so I can go back to Ohio for the reunion.
Right now on my plate I have to look for a house and I need to celebrate in a big way Brian turning 21. Secretly, I thought this day might never come and now that it ‘s here, I wonder where all the time went….then I looked at some of the pictures I’ve been gathering to make a special project for him….He had a full childhood…a lot of adventures…some really cool gifts….many lessons…lots of love….and ME. That was the most precious gift I could give him….and I think, in the long run, that was the perfect gift…not just on his birthday, but every day he’s been alive. I’m so proud of him, but then again no one could tell….RIGHT! LOL
I have one more appointment on Wednesday with my general practitioner to go over all the findings and discussions from all the doctors…I’m hopeful that he’ll agree with everything I’d like. The surgery would be on Friday of the Memorial Day weekend, a time I’d typically be enjoying the outdoors and putting together a picnic. I love the summer holidays, I have a LOT of dear memories of summers past when the whole year seems so alive! I guess I can forgo this year to have many many more years in the future with a higher quality of life. At least that’s what the goal is.
This seems like a good year to do this anyway…bad economy, having to move, reduced income because of mandatory furlough….I may as well be laid up during the vacation season…and besides, I LIVE in the destination capital of the world for vacations! I’ll be able to have many outings to cut the boredom if Brian or Gregg will bother with a wheelchair to take me to them just to get out a little. That would be cool. It’s not like I’m gonna be in that chair forever and getting out is part of the healing. AND, I’ll be stuck inside anyway because we’re coming into the hottest part of the year which, in my mind, I consider it my winter. That’s when I typically find lots of things to do indoors because it’s so dang hot…I can still however, go out at night when it cools off a bit. It also only lasts about 3 1/2 months so I’ll take that long of a winter vs a 7 month winter anyday!
After Wednesday’s meeting with the Dr. I should have most info until the end of May.
Now, it’s time to plan Brian’s birthday party! I’m getting really excited about it. It should be a good time, just a dinner with his best friend and his parents so it’ll be small, but that’ s when it’s fun when you don’t have to make 300 of something like I did for his 16th birthday.
Some people really slammed me for throwing that party but they never asked me why I did. First and foremost, Brian asked for it and worked from November of the year before until the week before his birthday to pay for it. He used it as a fundraiser for Make A Wish, raising $1350! Secondly, after attending the Immune Deficiency Foundation Conference in Maryland in ’04, I discovered his condition would put his age of mortality at between 15 & 30. I didn’t have time to say, “next year, I’ll do it next year.” I siezed each day, making the best of each day, and remembering in the back of my mind, Brian was only 1 infection away from dying. THAT was my reality as a parent. Try dealing with that along with balancing college, divorce, his medical needs, my denial that I was in pain, breast cancer, AND hedging my bets that they were all wrong so I had to raise him to be a good citizen and a productive member of society….MISSION ACCOMPLISHED! ON WITH THE PLANS!
My mom always said, “when in doubt, DON’T!” I’ve held true to that thought in the toughest of times, and it has served me well. I’m treating my own condition in the same manner I attacked Brian’s when I found out he was so sick as a baby…get as much information before I make a decision. Often with him, I didn’t have the luxury of time to make those decisions. In my case I do.
So here is a list of things I want to have happen in order for me to be in a positive mental state of mind for my healing to take place.
1. I want to move to a single family dwelling…I now live 18 steps up in a three room apartment over a garage.
2. I do not want to go to a rehab facility to do my aftercare. My mother-in-law spent a year on her deathbed trying to recover her body from the ravages of MRSA she acquired from a rehab center in Ohio.
3. I want to know that both Gregg and Brian know how to take care of Skittles and Candi the way they are accustomed to. They didn’t ask to be kept in captivity and are thriving wonderfully, but, they need the same level of care I’ve been giving them.
4. I need assurances from Gregg and Brian that their lack of ability to care for our home will not continue as I will not be able to care for it and them the way I have in the past. They need to step up and know that I didn’t just sit on my ass and eat bon bons and watch TV all day as Gregg once so aptly put it.
5. I would hope that my care would take some precedence over their self-indulgent ways so that I can heal quickly in a pleasant environment…I will be frustrated enough about not being able to adequately do things for myself without having to look at what they are too tire or lazy to do….tire or lazy was never an excuse I could use, the same respect should apply.
6. I do not want Jenny Craig or any other home delivery food service in lieu of a home cooked meal such as I’ve done for the last 14 years for Gregg and 21 years for Brian.
7. When I ask for something I expect to be responded to swiftly and in a pleasant tone and not ignored to the point of frustration, more often than not, the way I’ve treated them for decades.
8. In the event decisions need to be made, I want to be a part of those decisions, heard, and respected. I expect to have my opinions respected as viable and considered. Just because I am not able to perform all my regular life-tasks does not eliminate me from the process of life.
9. It would be nice to be showered in flowers and small trinkets (from Gregg and Brian) but I will settle for texts and emails and phone calls to let me know I’m connected to the outside world. LOL (well, maybe an occasional bunch of flowers!)
10. I don’t want to be left out of the loop just because I am not at full power for a time. I will not turn down a trip if I’m able to, even if in a wheelchair, to attend a venue that would otherwise be off limits to me to entertain me and get me out of the house. That’s also part of the healing process.
Having said all that….we’ll see how much they step up to the plate and actually do. I have no doubt in my mind it will be a challenge for both.
Making life and death decisions for another human being is taxing. I know. I had to make several for Brian with no additional input but the facts I had before me. I always prayed and trusted my gut, and that little voice inside that nagged at me that kept telling me if I thought it was the right thing to do. I’m using the same method now hoping that things will turn out as well for me as they did for Brian.
I’m optomistic now about the hands I’m placing myself in, Dr. Smith’s,( and foremost, God’s) knowing I want to live a long and full life. This will help eliminate the pain that limits that at the moment.
Well let me tell you! This morning’s appointment was waaaay good! The neurosurgeon, Dr. William Smith, is in the same practice as Dr. Derek Duke, the world renoun neurosurgeon that fixed Roy of Sigfried and Roy. Dr. Duke was the doctor I had my sights set on in the first place, but his collegue is the best, also world renoun, for doing lumbar spine repairs…he teaches all over the world…he’s going to Italy next week to do just that! And, he has access to Dr. Duke anytime anyway.
He said he would be able to fix me in two operations, not three. AND, I would still have movement! Also he said I may be able to water ski again and do gardening and even swim the breast stroke. He also added that I would probably be able to wear heels again! Yay! That means a lot to a gal! The operations would be done 6 months apart…the first one is to stabilize the lower back with shorter rods and hope for a compensation of the upper to correct itself on its own as is often the case. The second in 6 months would be to address the neck issues. The one thing I am so totally jazzed about is that he won’t be ripping me open from the top to bottom of my back but going in through my left side, or maybe both sides if he can’t stablize it by just doing it from the left. At the worse he said he may have to open me up at the lower back on my back but that’s a last resort and only a much smaller incision! Most of all he said it was up to me to commit to a rigorous rehab and therapy to know how successful the surgery will be. I told him I would follow his word to the letter.
He has a GREAT personality and is not at all arrogant although he has a right to be for as good as he is.
XXXXXXXXXXXXXXXXXXXXXXXXX This is me doing cartwheels already!
After hearing him talk about all the things I can do when I’m done vs all the things the last doctor said I wouldn’t be able to do…..I am so happy I can now hardly wait to get this done! I told him he’s got a deadline of August 1, 2011 to get me completely healed. That’s the month I’m going back to Ohio for my 40th class reunion and I want to wear heels for it! Like I said yesterday, I’ve got a lot of living left to do and I want to be pain free to do it!
For as freightened as I was yesterday, I have renewed my spirit and hope in this doctor to do the best thing for me that will give me the best quality of life in my remaining years!
So what’s next??? Well I go back to my regular physician on March 17th when we’ll discuss all the ‘”stuff ” that’s been presented to me. When that’s done I’ll call and schedule my surgery…the same day as before but with a totally different doctor! So I’m still looking at a May 26th or so date.
I feel like the weight of the world has been lifted off my shoulders! How cool is that! :>))
In my haste to write today before I left for other parts…I forgot to say that Dr. Perry said the whole back would be done in three different surgeries.
First, they’ll stabilize my back with the rods, then three or four days later I’ll go back to surgery to have my tailbone fused to my hip (I think that’s what he said), then when that’s all done, in a short time (he didn’t specify how long after those two) he would do my neck surgery to stablize it. The reason he’s doing it that way is so I have motion in my neck and can turn it and look up and down. If I’m gonna be three inches taller darnit, I want to be able to see my toes once he stretches me out and I can see past my middle! LOL I can see them now….I’m not THAT fat! By the time I go for surgery, I should have lost at least another 20 lbs or so. At least that’s my goal.
The one line in our visit that really scared me was when the doctor told me that I can choose to not have this done but by doing so will shorten my lifespan…DAMNIT, I GOT PLANS! I DON’T HAVE TIME TO DIE YOUNG, I GOT THINGS TO DO, PLACES TO GO! There’s too much living left in me to give up and die young! SO THERE, you take THAT you stupid back! I’ll show you who’s boss!
Fridays’ appointment with the orthopaedic doctor was very hurtful, more x-rays, and informative. The extra x-rays were to twist me in a U shape both ways to see how much flexsation my spine has, whatever that has to do with anything, that’s why it was very hurtful. All of my side bending and from the waist bending will be eliminated with the rods. I’ll have to learn to sit, stand, and get up from bed differently. The healing will be time consuming and the pain level will be brought under control from a 10 to about a five. The operation will take about 6 to 8 hours placing the titanium rods on both sides of my spine with screws.
The good news in all of this is that I’ll be about three inches taller than I am now. Woooo Hoooo! He warned it will not be a picnic to gain my independence again. I’ll be in rehab for a few weeks until I get my legs about me and learn all my new tricks. I have to scratch off my bucket list water skiing ever again and swimming will be limited to strokes other than the front crawl because I’ll have no twisting motion available, I’ll be bending from the hip. He said I still had a good mid-line of balance, which means that my body has compensated for each curve. Hence the 41 degrees vs the 47 degrees. The body truly is an amazing thing, we punish it beyond anything our Maker ever intended it to experience and yet, it has the ability to heal itself in many ways.
Well healing isn’t what I’d call what’s happened to me but….you get the picture.
This doctor, Dr. Archie Perry Jr., was confident that he could help me. He said he’s one of two doctors in Southern Nevada who do this type of surgery. I went with the intention of getting a second opinion, but after the doctor said he could fix me, Gregg popped up and asked when the surgery could be scheduled. THEY made the arrangements for the surgery…Gregg wanted it to be April 9th…I have visitors coming in May 12th to the 19th so I told him not until after that so they made the date of surgery as of the 26 or 27th. I felt like I was bullied into making a decision since I haven’t seen the neurosurgeon yet. I go to Dr. William Smith tomorrow. On the 17th I go back to my regular doctor, Dr. Roland Sparling and we’ll hash all this out….he’ll help me make sense of this all, I trust him…I can always cancel the surgery date if I’m not ok with everything I want…I think I really want the neurosurgeon involved in a big way with what I’m having done because there are motor nerves involved that are pinched at the L4 and L5 level that need to be released. I want to still be able to walk and swim when all of this is done. I don’t want to land in a wheelchair for the rest of my life.
As a diversion, I went to the Las Vegas Scrapbook and Stamp Expo yesterday with a neighbor of mine who shares the love of the craft in a zelous way like me. It was a fun day getting lost in the Casino parking lot. We had the same idea at exactly the same time about a set of stamps she bought and we laughed so hard cause we did. We did a make and take project and while we were, they were holding the doorprize drawing. We had our tickets out by us working away when he called out my number and I scared her and myself when I screamed I won! It was a cool pink bag full of all kinds of chipboard stuff, most of it was pink, so I gave her the bag and the pink stuff (she has three girls) and I kept the other stuff so we both won a prize. I took her to this little shop here in town that hardly anyone knows about that has over 10,000 rubber stamps! She was like a kid in a candy store. We had so much fun, laughing and doing just ‘girl’ stuff. It was very relaxing!
More after tomorrow’s appointment.