Just when I started blogging once more, my Earthlink DSL went down! I spent 5 days trying to communicate with Indian tech people and was ready to cancel the service but was disconnected before I got transferred to whoever did that.
Today it was working again. Earthlink is not my friend.
The Friday Breakfast With Social Workers was re-named last month. I now call them The Gang of Five. I include myself because I'm one of them but my voice is small.
Sue and Penny were the only regulars as Pat and Carol were out and about elsewhere. Penny took me to the outpatient clinic where I tried out the special wheelchair device that helps frail arms move food from plate to mouth. It's called a deltoid aide. They also had me try using a spoon that was bent and re-shaped and actually seemed usable.
The request for the feeding arm had to be sent to Medicare where it would be denied and then resubmitted to my secondary insurance where verbal assurance was made that it would pay the $450 price IF it was ordered through one of two specific providers.
At some point my electric went off and Penny drove across town and put all my gear in her car. She drove me to where Sue was finishing up her shift as volunteer/employee and moved me to Sue's car. In the meantime my electric came back on and Sue's went off so the Keystone Kops returned to my house and Sue spent the next four days waiting on me hand and foot.
The Queen was trying to take a relaxing cruise during all this and was ready to add me to the BNL fan picture if Social Work failed me.
At some point they decided I needed more services so they got me hooked up with a nurse, occupational therapist and personal care attendant who came to my home. These people have worn me out with their phone calls, home visits and suggestions. Being "discovered" and assited after being disabled for 57 years was puzzling. But on the other hand It got me through January.
Jumping back into the Blogosphere without a GOOD story to tell.
Every day in January was measured out by television programing time. The same for meals. Lucky for me I seldom watched television until the century turned so many things are new. There are marathons on holidays so you can fill in any gaps that happened when the phone or a visitor disturbed your tv experience.
I have breakfast with The View. They all talk at once and I amuse myself by using closed captioning to see what they are saying. The poor soul who is writing the captions has a confusing time of it but does better than I would. At noon I listen to NPR's Fresh Air if it isn't on during fundraising week. NPR is set on all the house radios... six and one is left on at all times in the garage.
When I used to garden I started leaving it on because most of the tools were stored in the garage. I guess it was company. Now other people pass through the garage and they are unnerved by the unexpected voices. I speculate maybe a criminal would be.
My beautician calls on Tuesdays to tell me she is coming to do my hair and I use the garage door opener to lift the door for her from inside the warm house. She has been coming here for four weeks. Next week we will try a sink permanent. She has set up a darling little mini beauty shop in a rolling cart where she stores her blower,curling iron,shampoo and other supplies. I feel so lucky to have her go to all this trouble for such miserable hair.
Hold on! Beautician coming to your home? GOOD thing.
i'll post when something GOOD happens.
Don't hold your breath.
My head was whirling so bad yesterday I could not go to the restorative beauty shop. I got it under control with saline and Musinex.
My internist's office gave me an appointment for today at 11:15. Ellen got me there. She told the doctor, "This is not my mom here." We were told there was no way she could help me in regard to my left side neurological spells.
So I'm going to change to Ellen's doctor who is affiliated with Barnes/Christian Hospitals. And Sherry has given me a late appointment today to turn me back into Ellen's mom.
The electric was off for one hour at 7 am. Pack your flashlight WW.
It is day one of 2007 and the cleaning woman is coming at 4 pm. She will work at her hospital job for time and a half and top off her day here. Ordinarily she works every other Monday but she can't resist holiday benefits. If Gary and Ellen come earlier the dog and Gary will track in enough dirt to give Tabitha a sense of accomplishment.
This morning I turned my head far to the right and triggered a left arm spell. This is encouraging because it means the problem is definitely on the right side of my neck. I'll see if I can replicate it when Ellen is here. The reason I'm encouraged is if I can replicate it maybe I can control it. Maybe.
One of my presents was a Sharper Image Soap Genie. When you pass your hands under the spout it plays a melodious riff and poofs out hand soap. Very disabled friendly.
The AT&T guy fixed the HUMMMM in two hours. I had forgotten how amazing it is to hear a call clearly.
I've been thinking about all those poor souls in the ER. Most of them like me, sent there by a doctor who didn't want to deal with their complaints. So we all were taught a lesson. The only thing our hospital ER could provide was a pat on the head and an inflated bill.
Scheduling doctors appointments on 11/27 and 11/29 gave me the sense there would be no more this year. But today's visit to the polio specialist has generated referrals for yet more appointments. On the other side of town of course.
It has been 18 years since my first evaluation by this fellow. I was able to give him a copy of his own evaluation. Hospitals lack file space I guess. He has mellowed and so have I. He suggested there might be some device used by quadriplegics to feed themselves. A sling that swings from a stand. But first I have to go through a therapist to see if the thing will work for me. I find this encouraging.
An ice storm is bearing down with snow hard on its heels. Not a time for travel. I may opt to wait for the new year to dine graciously.
Tuesday I had a trifecta of arm spells and Wednesday a left arm and leg spell while in the garage. So I'm not recording spells anymore. I did think of calling the doctor but when I picked up the phone the loud HUMMMM reminded me that even Ellen had not been able to navigate AT&T's voice mail or web site.
This time I pressed O and got a human who switched me to another human in Repairs who scheduled me for HUMMMM removal on Saturday. Once the phone works and holiday mode is over... who know what proactive things might take place?
This year Ellen made a quiche which was wonderful. She was surprised to see a lighted jeweler's loupe as her present. I ordered it from Widgets.com. Owning a Breathalyzer AND diamond viewer should keep her busy at parties.
I got many delicious things to eat. An aqua cordless can opener, hand soap dispenser and personal shower brush scrubber. A complicated spoon feeder that would look good to a non-disabled person but I knew instantly wouldn't work for me. I did try it. A GE analogue speaker phone.
I had a spell in their presence at 3:30 pm and after they left at 6 pm. As I was writing this it happened at noon accompanied by a full arm tremor.
The O.T. girl called to say she would begin the process to get me the mobile arm support. First a letter must go to Medicare. Since the support isn't "coded" it will be denied. Then that denial will be sent to my insurance, First Health, who have said verbally they will pay it but only if it is ordered from Health Link who won't order it until Medicare denies it.
Everyone I've talked to thinks I should buy it up front which means I could get it quicker. But insurance would not reimburse me if I do not go their convoluted path. It would put Tiny Tim in tears but not this hardened State bureaucrat.
Friday was such a breeze I think I need a social worker to visit me every day to attend to my business.
Currently there is a hum in my phone and I tried to tell AT&T about it. When none of their phone numbers would help me I got on the net. That didn't work either because I didn't have the last 4 numbers of Dan's Social Security # or my last phone bill. So everybody who calls me says "Did you know there is a loud hum on your phone line?" I say it is because I did not save my phone bill because I pay it electronically by computer compounded by the fact I never memorized Dan's SS# after he died 17 years ago.
If I had a social worker she would paint this pathetic picture on this half blind cripple whose only communication with the living world is her phone. Probably by letter with copies to the Public Utilities Commission. HUMMMMMM.
Spell count: Saturday 6 pm. It's becoming more like I stuck my left hand in an electrical outlet. I can move the arm while it's going on.
Yesterday the social workers had breakfast here and Penny stayed to drive me to my Occupational Therapy evaluation across town. Sue had left orders I was not to dress. Just put pants on beneath my caftan. Not how I like to be seen in public but certainly easy.
Penny filled out the long questionaire and was practically in my lap during the 2 hour session. Although she has known me 36 years this is the first time she observed my defects first hand. Fortunately there was a burn victim in the area who diverted her attention.
The therapist had me try a mobile arm support that attaches to a table or wheelchair. Under $500. I ate some pudding using it. Just the ticket for my needs. Figuring out the mechanics of where to order it and who got to pay for it fell to Penny and the therapist, Amanda.
When we got home Penny got on the phone and in a short time got people moving and shaking. She is a wonder.
Spell report: Thursday 5 pm Friday 6 pm.
I'm wearing my Gary collar. Today is the first day I tried to put it on myself and it is hanging on precariously by a wisp o' velcro. This pathetic loose application took me 20 minutes. Glad I did not pay for my own girl sized collar.
On the plus side I was able to answer the phone with my wrist Lifeline! This means I can sit in the electric powered chair and when the phone rings press my wrist and it answers the phone. I can yell across the room and say "Stop calling here you people! 'Dirty Jobs' is on!" or talk pleasantly if it is during a commercial break.
Eventually you have to whack the transmitter reset button to get it back in rescue mode. If you don't it beeps at you annoyingly.
Spell Count. One yesterday while eating a salad before Donna put on the collar.
Today the Lifeline lady hooked her machines up to my phone and gave me a bracelet to wear which I can press for emergency help. $40 a month.
Next Sue brought 6 frozen dinners. She leaves tomorrow to spend a week in Michigan with her 99 year old dad.
Art and Donna brought lunch. She was able to cut down Gary's cervical collar for me. I have it on now. While I was eating my arm acted weird for a second.
This journaling is easy but who would waste time reading it?
Today everybody is out of town. Partly due to Thanksgiving travel and other vacations. My East neighbors had a death in the family and will be gone to the funeral and wake. Death happens around the holidays and darkens them with shadows for years to come.
It has been nice having cell phone contact with Q & Gary while they are in Chicago. Gary jabbers away in the background while Q and I say "What? Can you repeat that?" Much like phone calls when they are home. There was an electrical fire at our airport the day after they left and it was a nightmare for travelers. Lucky for them they missed it.
I have been trying out my gifted electric chair and think I'm going to be very popular with my son-in-law. It eases back into a full reclining position and also up and out. All soundlessly and with a handheld remote button. For years I refused to let a recliner into my house but nowadays I'm more adaptable. My friends' husband and son carried it in with the most pleasant expressions on their faces. Like it was exactly what they wanted to be doing.
I enjoyed watching "Taxi Driver" last night and it was much different than I was expecting. They should destroy the music sound track. It didn't suit the movie to my way of thinking. "Prime Suspect" is on Masterpiece Theater tonight. I'm just loving tv lately.
Had the tiresome weirdness in my arm at six pm even though I did neck exercises and wore th cervical collar 5 hours.
I tried to put it on today but could not. Remembered yesterday Tabitha put it on me and I had a struggle getting it off. I hesitated asking her for help but figured if she worked as a unit secretary at a hospital she could handle it. She was very sweet about it.
Today I tried to cut it down to my neck size but my box cutter didn't make a dent. I'll try the electric knife tomorrow. That's what they use on "Trading Spaces" to cut thick hunks of foam. Art and Donna are bringing lunch around the same time as the Lifeline Lady is installing my "I've Fallen and I Can't Get Up" gizmo.
You can telll I'm hurrying. Not much content here but a post is a post. Time to waggle.
Head waggling worked on Saturday but on Sunday I had two "spells" in late afternoon. Today I dug out Gary's cervical collar and am wearing it now. Since it was Gary's there is plenty waggle room.
Ellen found neck exercises on the net (high tech waggles) and I'm doing them at least 3 times a day. My experience with doctors is they do tests and refer other doctors. Eventually you fall and they send you to a hospital and on to a nursing home. Not encouraging.
Ellen came over after a three week bout with croup. She still is coughing and in pain. Gary has incurred my wrath by censoring parts of her blog. The big blabbermouth gave her blog address to people he works with and now is trying to censor who she writes about. The nerve.
Becs blog has never been the same since she went vanilla on white. But I don't know the answer. Guess free speech is a losing battle until you are so ill and boring no one reads or is interested in what you say.
Doctor called at 7 pm and I mentioned the numbness that had been going on most evenings since the 29th. He wanted to know "What I wanted to do." He mentioned a myelogram and I tuned out. I ended up waggling and rotating my neck until bed at 8 pm. Second day with no numbness and much neck activity.
Q found a spine site that suggested a cervical neck brace. I have one tucked away that was Gary's so will haul that out later on and see how it fits.
For a treat i opened a can of Delmonique Lobster Bisque. 260 calories. I could drink it with a wide straw. Lobster was fifth on the list of ingredients but not observable. Something different from my usual fare and enjoyable.
I now have a Lifeline scheduled for installation on Wednesday. No, I didn't fall but I could have. It isn't mini strokes. Something is haywire in my neck/spine that has been causing a daily "spell" of numbness in my left arm and leg. If I'm standing I could drop. It's scary.
There are said to be exercises that can be done but no one will give them to me so I can commence them until the 22nd. I have a call in to the doctor to try and get them verbally. I'm encouraged to think I might be able to do neck exercises to prevent this numbness. Yesterday I waggled my head and neck all day long and for the first time all month did not have an evening "spell". Encouraging.
I started this blog to tell stories and write my take on my life. I think it is turning into a journal. The worst part about that is only negative things are happening. Nothing bugs me worse than an intermittent blog. I go for my daily visit and they are absent. I'm abandoned !
So I'll try this daily journal approach for a month. Maybe WW will join me?
Every now and then my left hand flops down on the keyboard and deletes a post in mid blab. Today I was trying to describe a daily "spell" I've been having. I decided it meant I was not supposed to write about spells. It's just as well. My internist said she doesn't have a clue what causes them. I've found eventually things escalate to the point even a cretin can pinpoint the cause.
I once had a low grade infection in my ethnoid sinus for 5 years. Finally my pulmonary doctor cat scanned my head and discovered it. Factive antibiotic wiped it out. But my symptoms had been "I feel like I'm having an out-of-body experience." How could anyone diagnose and cure that?
So as long as my "spells" only happen when I'm sitting and only last 2 seconds I'm okay with them. I have so little control over my body nowadays. I definitely need to increase my chocolate consumption. Couldn't hurt.
Q has been sick for a week and like all of us is ready to be better. My Easterly neighbor Archie twisted his knee in the snow at church. He showed me how he could bear weight on it but it hurt to bend it. My own complaints haven't changed but I can't talk about them until everyone has recovered.
Yesterday we had our annual Christmas breakfast here with just the five of us former social workers. They gave me a red poinsettia and a Dale Chiluly calendar. Pat made marshmallows from scratch and bagged them with a hot chocolate mix. Penny gave ornaments. Sue gave Truffles and chocolate covered pecans.
They all live on the other side of town from me so I assuaged my guilt over the miles they drive by giving them Shell gas cards. Not personal or creative but the best I could do this year. One year I threaded red ribbon in brown burlap sacks to hold presents. Apparently the sack gave off a pungent smell but I didn't notice. Every now and then someone tries to re-gift me that sack. Pat tried this year.
Over the past twenty years we have taken a group picture in front of the wood Christmas tree. Only one person in this crowd has grandchildren. Carol has seven. Otherwise we are are own grandchildren. And we spoil ourselves.
Returned Sunday from another exile to the castle due to power outage.
It began Thursday with flickering lights so I went to bed. At 11:00 pm all systems were down so I unhooked my ventilator and phoned the power company. I use a "special number" they gave me and someone picked up right away. She said 100,000 people were without power and it would be off for a day.
She suggested I go someplace else, call my doctor and stay warm. So I went back to bed and stayed there until daylight. I decided to just stay put but my friend Sue got involved and blabbed to Ellen and before I knew it had dressed me, packed me up and whisked me across the river where sensible people put their wiring in the ground.
Q was working from home and Gary was fighting snow and ice accumulation in the driveway. Q was beginning a dandy cold and graciously allowed me to force saline nose drops on her and make unhelpful suggestions. She actually wore a pair of slippers at one point in an apparent acknowledgment that she was sick. Unprecedented!
The next day she went to my house and unloaded both freezers and transferred it to her empty freezers. Then she shopped for a stranded friend and baked a cake for the friends party. While she was at the party Gary cooked maple syrup sausage links and thawed Marks homegrown sweet potatoes from my freezer. We dined at 7 pm and he did all the serving and cleaning up.
Q coughed all night. By morning she was voiceless and sick. Gary packed me and all my food up and hauled me home. Their annual tea is in six days. I don't think he can pull it off alone but whatever. He has proven once again that he ranks right up there as my favorite son-in-law.
Disabled Awareness Day. I have shoulder high hooks on the backs of doors and place garments backwards on the hooks. Then I back into the hook and slip my right arm in the sleeve. I shrug my shoulder and get the garment partially on myself and off the hook. Next I go to a tall dresser and use that to prop my arms against and tug the left side on. The hard part is fastening buttons or snaps.
This year the difficult part has been positioning the garment on the hook. They have become too heavy. Or to put it correctly my arms can't lift squat. So I stay in my polyester caftan until i can devise a better dressing solution. The only time I really need to be dressed is when I get my hair done.
I've found shoes that zip and are lined with sheepskin. So I wear them without socks. The car warms up quickly for my mile trip and the shop owner helps me on with my coat when I leave. Usually that is a heavy sleeveless vest so my arms aren't weighted down for driving.
Another issue in my decline has been toothbrushing. For this I developed the Extendo-Arm (patent pending). It is a plunger inverted on a base. The concept was I would wedge my right elbow in the rubber plunger piece and my hand would be in the vicinity of my face. This has worked better than you would have imagined. Some day you will see it featured in a handicapped supply catalogue for $100. You saw it here first.
My first Christmas present from Dan was a dark blue sweat suit. I couldn't raise my arms to get it over my head and he knew this. But he really, really wanted us to have matching sweat suits.
My last present was a pair of Rebok running shoes. He sold a putter when he learned he was dying and sent Q to purchase the shoes. I don't run or tie shoelaces but it was a fitting gift from my sports minded husband.
When Q was dating Gary he brought in 21 presents for her 21st birthday. We were a one present family. She was bedazzled by his generosity.
Every Christmas Son of Cloud would look in the driveway to see if there was a car with a red ribbon festooning it. I did buy him a few cars but instead of ribbon he got lectures.
People who set up standards for the type of partner they want to marry really don't want to meet anyone, much less marry them.
We all want to be valued and desired. It is appropriate to let people know you appreciate whatever good qualities they have. You make them feel good by sharing your observations with them. They like being with you. They don't feel pressured to be someone they are not.
Age is not important unless the older partner wants to have a baby. Then the age might be a factor. My aunt married a man when she was 50 and he was 30. When he died after 30 years of marriage, she still looked 50. Currently at age 90 she has three fellows interested in her. The 40 year old one she fancies is married. The other two are in their eighties. We who know her agree they are too old for her.
Some people have the energy for relationships and some don't. If you have the energy, don't sell yourself short by setting up arbitrary age limitations. See what happens. It might be fun.
My initial use of the gifted electric chair was disquieting. I sat back and pressed the button. Slowly it eased me back, little by little, until I was resting horizontally. "Hmmn," I thought. "I can see how people fall asleep in these things. Comfy!" And then the phone rang. By the time I powered down and came in for a landing the answering machine had had a meaningful conversation with the caller.
Back into it I went and tried to find a midway position when it dawned on me. I was a chair prisoner! Without the remote I could not get out of that chair! This scared me. I imagined myself high and dry in that chair spread-eagled for a week until Q found me. So I had to set up a little nest beside the chair for a phone, the tv remote, water, snacks and Kleenex. (Survivor Man would have added flint and firewood.)
I was still nervous about the power failing and spending 9 days in an electric chair. I studied the ways I could crawl out of that chair if the remote failed. Impossible. Too deep. I decided to use the chair in the upright position and let able bodied guests risk imprisonment. The next day I read the brochure and saw there was battery backup so that the chair could always be lowered in case of power failure.
Guess all those years testing at Sing Sing somebody worked out the kinks for us retired seniors.
I've been watching "Six Feet Under" on the Bravo channel every Monday. This morning I turned the television on while I ate my cereal and there was a marathon so I watched some of it again. I was amazed at what I had not attended to.
Part of the problem is I don't always watch the set. I have it on while I'm unloading the dishwasher or the microwave is humming. If I am quiet I get impatient with commercial breaks and jump around. That means I miss out on opening scenes. So I watched more attentively this morning.
Inevitably the neighborhood boys started with their blowers,suckers and scrapers and won the noise competition and I lost interest in recycling life in the funeral home. Now I'm looking forward to "Taxi Driver" which I have never seen and is being shown tonight. For someone who never watched tv or many movies I'm making up for it now.
When Dan was alive we never watched tv together. People thought this was strange. Dan would have labeled "6 Feet Under" as "goofy" as he headed out to the sports channel. Yet he was a man who in the sixties was hooked up to one of those ratings boxes that measure what tv you watch. He claimed he singlehandedly kept "Gilligan's Island" on the air its first season. Now THAT'S goofy.
The breakfast crowd made fried eggs,biscuits and sausage gravy and homemade applesauce. During breakfast the kitchen ceiling light flickered out and we learned how many social workers it takes to screw in a ceiling light. The puzzlement was getting the thing apart. Luckily I had florescent bulbs stockpiled so eventually there was light.
After everything was done we noticed a screw in the corner of the cover. Sue started giving detailed instructions for me to give Gary. "Stop right there!" I said. Gary would have immediately bought a top of the line fixture and had an electrician out to install it. The screw looks much like a dead bug. R.I.P.
