the good and the bad

The good news is I have been having good luck with my aids lately. I so wish I could even heat up a plate of food and carry it back to my bed so that I could let my girls have the holidays off.  I can't carry it and hold on to the furniture and walls to walk.  The hallway in my mobile home is too narrow for my wheel chair and I need both hands to wheel the chair.  I tried putting the food on the bench of the walker and it slid off and spilled all over the floor.


The bad news is my respite worker that is supposed to bring my son over never called me this week and when I called today to see if she was coming over her phone has been disconnected and she never showed up.  Last week she said she would bring him over today at the same time as last week.  So I am having another sad let down day.

soft diet

I am having soft foods the last few days.  Today my aid brought me some chicken noodle soup out of a can that was so hot I let it sit 10-15 mins and it was still too hot to drink the broth.  Then she made some tomato soup w/milk for later but she only put a 1/3 c milk instead for a full soup can  it's a good thing she showed it to me cause it would have been way too  tomatoey for me.  I also had her make me some mac and cheese for dinner.  I'm more of a shell and cheese type person but all I had was boxed mac with the cheddar cheese.

Lunch is worth repeating again for dinner

Boy was lunch good today!  I had some frozen tri colored bell peppers and onions and added a some chunks of roast beef and a can of diced tomatoes w/ mild green chilies.  I would have used salsa but I didn't have any. It was served rolled in a flour tortilla, boy was it good.  I could have used some guacamole and sour cream but it was good just the way it was and less calories.  No doubt what I am having for dinner tonight.  :-)


I had a substitute aid yesterday and when she put the groceries away she didn't ask where any thing went she just put stuff every where so my girl had her work laid out for today.  She didn't mind, at least there was food to cook again. LOL

I'm starving

I was so hungry this morning I had my aid heat up some chili beans and add some spices but I only took 4 bites and gave it back to her, I sent her to the store for just a few items.  She came home and cooked 5 lbs of hamburger but a I forgot to have her make 4 patties for me.  I also forgot to have her slice a tomato for my 1/2 sandwich @ bedtime. My next aid comes at 5pm so I only have 1 hr to wait.  I want a big mac or even a PB & J sandwich, or a chicken, or a cow, any thing would be fine right now! LOL  Of course I am torturing myself by watching Wolfgang Puck on HSN.   I watched what seems to have been an hour just on the pressure cooker and now they are demoing an electric cookie press. now that is over they did a pan but now they have the food processor on. OOPS I fell asleep for a few mins.  I do that a lot. Now I only have 15mins until my aid gets here. Yeah!!!  I am such an appliance junkie I think I need to join a support group.  :-)
Well when my pm girl brought me my chili there was big chunks of hamburger and the AM girl had put the whole 5 lbs of cooked meat in it.  I only had her use a 1/2 lb the last time.  I like it really tiny and the best way to cook it tiny is to boil it. A friend of mine worked at a Mexican restaurant many years ago and that is the way they cooked their hamburger.  I took out as much meat as I could without loosing too many beans and split that into 2 bags for 2 different meals.  I  am thinking one will be tacos.  Of course I have more chili made for my lunch tomorrow and maybe more I didn't see how much was left.
ttyl.
Darlene

homemade veggie soup

Yesterday I had my aid make me a big pot of veggie soup since it is in the 60's that sounded really good to me.  It was pretty good but she forgot to put the potatoes in it and it wasn't very filling to just eat the veggies.  It needs more beef flavoring, garlic and some pepper, it should be pretty good after that.  All I wanted for breakfast was leftover cold stove top stuffing.  My bedtime snack was already made so she had an easy day  today.

My chili make over

I forgot to tell everyone how my chili ended up.  As I mentioned before my aid put my already cooked canned chili beans  (with all the spices almost the way I like it but ) in my pressure cooker and then filled it to the max full line with water.  When I went to eat it there was nothing but an onion water flavor.  Last night I had my other aid drain out all the water and we added a can of tomato paste, more chili powder, cumin, and some garlic powder.  It was so good I ate a big bowl of it last night and another one this morning.  I really should have breakfast on the weekends because she comes at 10am but it was just so good last night I wanted it again for lunch.  I am going to have Todd fry chicken nuggets for out dinner tonight. and maybe some seasoned fries.
ttyl                    

Not at my house this afternoon

I decided to repost this because it went through so tiny I can't even read it. I can't believe that was normal and this is larger not the huge option and there is nothing in between.

I had to place my son in a host home 7 mos ago, or he was going to be taken away from me because of my health and the fact that I have no one to take him in case I couldn't watch him any more.  It breaks my heart that I have only been able to see him less than 10 time in the past 7mos.  It was finally all set up to have a respite care worker bring him over for 2 hrs. today but she called the host home mom and said she was sick.  If she doesn't show up next week I am turning it over to his case manager!  The financing for this was approved at least 3 mos ago but the host agency gave me the wrong phone number,  I was leaving her messages every week begging her to get back to me.  I don't understand why the new person with the number didn't have the courtesy to call me and tell me that she no longer had that number.  Maybe they only speak Spanish.   Anyway I am crushed and crying today. Meanwhile the man I've been dating for the past 9 yrs. is taking another woman friend to the Museum of Natural Arts to see the King Tut .  She doesn't drive so she asked him to take her.  My BF lived with her and her husband for 9 yrs. now they have split up after something like 16 years so she is helpless.  I told him to be careful she is going to latch on to him, she'll be calling for him to help her all the time.  I don't like it at all but what am I to do?  It's not like I can hop up out of bed and go with them.  Of course I wouldn't have done that today since my son was SUPPOSED to be here for 2 hours today.  My respite care is set up for only 2 hours a week.  I have a total of 8 hrs a month paid for so I chose to see him once a week.  His brother and I watched him 24/7 for almost 22 years.
Sorry I gotta go for now I need to play a game to get my mind off of everything.  While your here please ck out my blog on darlenesads.blogspot.com and fill out some leads for me or do some surveys so I can earn some money to pay to my own person I find to go pick him up and come help watch him.  TIA
Darlene

Not at my house this afternoon

I had to place my son in a host home 7 mos ago, or he was going to be taken away from me because of my health and the fact that I have no one to take him in case I couldn't watch him any more.  It breaks my heart that I have only been able to see him less than 10 time in the past 7mos.  It was finally all set up to have a respite care worker bring him over for 2 hrs. today but she called the host home mom and said she was sick.  If she doesn't show up next week I am turning it over to his case manager!  The financing for this was approved at least 3 mos ago but the host agency gave me the wrong phone number,  I was leaving her messages every week begging her to get back to me.  I don't understand why the new person with the number didn't have the courtesy to call me and tell me that she no longer had that number.  Maybe they only speak Spanish.   Anyway I am crushed and crying today. Meanwhile the man I've been dating for the past 9 yrs. is taking another woman friend to the Museum of Natural Arts to see the King Tut .  She doesn't drive so she asked him to take her.  My BF lived with her and her husband for 9 yrs. now they have split up after something like 16 years so she is helpless.  I told him to be careful she is going to latch on to him, she'll be calling for him to help her all the time.  I don't like it at all but what am I to do?  It's not like I can hop up out of bed and go with them.  Of course I wouldn't have done that today since my son was SUPPOSED to be here for 2 hours today.  My respite care is set up for only 2 hours a week.  I have a total of 8 hrs a month paid for so I chose to see him once a week.  His brother and I watched him 24/7 for almost 22 years.
Sorry I gotta go for now I need to play a game to get my mind off of everything.  While your here please ck out my blog on darlenesads.blogspot.com and fill out some leads for me or do some surveys so I can earn some money to pay to my own person I find to go pick him up and come help watch him.  TIA
Darlene

my am visit today

My am aid made me a couple of hamburgers for lunch but I would have only wanted one of them if the buns had been any good but they were freezer burned (barely), but I thought if she defrosted them they would have been editable but they weren't so I tried to eat the meat and tomatoes and pickles but the meat was extra lean and I chewed and chewed and it just sat there in my mouth and it was so dry I kept choking on it.  Needless to say I didn't finish it.  NO wonder I am loosing so much weight.  The last time I checked I had lost  35 lbs since April 15th when the hospital finally took me off my Lyricia that made me gain 100 lbs in 3 years I was on it.  I am so relieved to be off of that!  Tonight I am going to try to redo my chili for dinner.  That's about all I've got for you today.
Sending every one best wishes for all they need and some of what they want. :-)

My aid today

My aid made canned chili and I told her to put it in the digital pressure cooker/crockpot she put it in there and filled the pot to the max full line with water.  I just assumed she would KNOW that it was already cooked it just needed to stay warm for my dinner tonight.  I had her dump out all the water out and add a can of tomato sauce, chili powder and cumin, if it is still too runny I will have my night time aid add a can of tomato soup and more spices and see if that helps.  I'm sure it will turn out eventually LOL  I forget that people don't know how to use all of my appliances. I am a totally addicted to kitchen appliances. One aid totally unloaded my stove which is filled to use as storage.  I have cooked everything in a toaster oven for maybe 10 yrs now at least that long.  I MAY have used my beautiful new oven (in the one house I had) 4-5 times to make cookies.  It all started when my oven went out 10 yr/s ago.  The first oven didn't really go out the electronic ignition went out and the stove was so old we couldn't find the part to fix it, it was just too hard for me to bend down to light it with a match so I quit using it. I had a microwave with a convection oven in it and that was all I needed.  I usually just cooked one pot meals on the stove or heated up casseroles in the convection oven now I just use a toaster oven, my stovetop or my digital pressure cooker.  My aids are usually only cooking for me so we usually have extra for the freezer.

good help

The girls I have working with me now seem to be really good. I just pray they stay.  The morning girl said she would work 7 days a week but she put in 79 1/2  hrs last week so now she is thinking she wants to take the weekends off or at least Sundays.
I just sent her to the grocery store for the first time, but I think she will do fine.  Our store is one of those big super stores and it is pretty overwhelming.  She is complaining about having a sore left arm for the past 2 days.  I hope it's not her heart! I felt guilty sending her to the store.   I always feel guilty when my girls have any kind of pain because I am in pain everyday of my life and working would be the farthest thing from my mind if I could.  If she gets back in time I am going to have her make a pot of chili we are having some cooler weather the next couple of days.  I had some really good chicken broth with tomatoes w/green chilies made up yesterday but the aid last night took it out of the Crockpot and left it out to cool and forgot to put it in the fridge before she left so I'll have to throw that out too.  I hate wasting good food even if it was just a killer chicken broth.  Last night I just had the broth w/ a couple of spoonfuls of cooked macaroni in it.
I hope everyone is having a great day.
Darlene

getting out today

My PCP came early today to help me get ready to go to my Dr. apt.  I took 4 bites of my pancakes 2 sips of coffee (mostly vanilla creamer) and my stomach started turning.  I told my Dr. about my stomach hurting almost every time I eat anything, so he gave me a test for  Ceilicas  (SP) which is and gluten intolerance.  He also put me on a medicine for my IBS I have never had medicine for that and I have had it for over 30 years.  He is also going to send me to an Endocrinologist to get a biopsy of that and  to check on my Barracks disease which is pre cancer of the esophagus.  He sends me to some kind of a specialist almost every time I've seen him.  At least he is through and I am getting him to listen to me.  I hoping he is going to be a keeper,
My good CNA was at my Dr.s office and when I came out she told me they think she has strep.  She has been coming over here and has been complaining about having an ear ache and jaw pain but never said a word about having a sore throat. I sure hope I don't get it!
I was hurting so bad I didn't even want to stay out and go to Wal Mart and I love going there just to look for food deals, so my friend brought me all the way home and then went back out to do her errands.  I got a really bad Charlie horse in my left leg  just as I was ready to get into the car just as I was going to go ahead and try to get in the car I got a really bad one in the right leg.  It took me at least 6 mins to get in my own mini van.  I can't even get in a reg car any day of the week. The strange thing is I had 2 vaillum and a Vicodin in me.

I knew it was too good to be true

The  PCP that I really like worked 2 days and called in sick today.  I guess I'd rather she did that than come in and get me sick.  At least the sub speaks English very well.  That has been a real problem.  They would stand there and smile at me and say they understood what I wanted and then do something completely different.  At least today was good, and for that I am thankful.

I guess the good help is still here today

My aid this morning made some really good breakfast burritos for the freezer I had one with leftover gr. chili I have enough gr. chili for one more and we will still have several burritos in the freezer.  Tonight I am going to have a simple supper of kind of a egg drop soup without the eggs. It will have chicken broth  If I am still hungry I will have a fried chicken patty sandwich.

When she finished cooking and cleaning up the kitchen she cleaned the mirrors in my bedroom and bathroom and the TV screen.  Boy was that dirty! BTW my kitchen is totally under her control now.  Plop plop fizz fizz oh what a relief it is! :-)

today's homaker

My aid today made a killer pot of gr chili.  I ate 1/2 of what she brought me and she had already put some in the freezer.  The 1/2 I put away will be used later this week when I get some eggs and she can make me some breakfast burritos to keep in the freezer.  She cleaned out my fridge so good it looks new.  She found 2 new tubs of margarine that my night aid just told me I had none.  That was the same aid that told me I didn't have any chicken noodle soup and I ended up having 5 cans in the pantry where she was looking 6 more in another place and 2 sitting right out on the counter!  The aid I had today is the same one that found all that soup the morning after the other one told me I had none.

This nice lady washed and had dried about 20 bowls after having to throw out all of those leftovers that no one ever told me I had. No wonder my grocery bill is so high!  I have really bad short term memory

so most of the time I can't even remember what I ate the day before and they never tell me if they made extra.  My lady today even stayed over time to make me tuna salad for dinner and a sandwich for bedtime snack when I take my bedtime medication.

things never stay the same

Yesterday the HHC (home health care)agency said they were going to send a new girl and I was not happy about that.  It is just so hard to train new people from my bed. I got a call right before they closed last night and was told that the girl I used to have that I really liked is going to take me on 7 days a week. I was going to say she was going to do me 7 days a week but my BF started roflhao so I thought I'd better change that.  I don't expect someone to work that hard 7 days a week but I'm going to enjoy it while I can.  When she was here last Thursday she said we needed to clean out the fridge. Yea, so I know what we are doing today.
People keep telling me that maybe I should just change agencies but I really like the office staff at this agency.  I did let them know that I am very disappointed with all the care I have been getting lately.  I told the owner that I really like all the people in the office but I have thought about going elsewhere and he assured me that they would not take away the girl that is coming back.  She is really friendly and she likes me.  LOL  She says I am one of her easiest clients so what's with all the other aids?
In fairness to the aids they don't get paid nearly enough to make it worth their time.  Almost everyone that comes in says they hardly have gas money to get here and most of them are looking for better jobs.  They just can't live on $8.50 an hour.  The bad part is the girls that take these jobs are usually from very low income housing areas and are very hard and street smart.  It is really sad to see because most of them are very young , in their 20's & unwed mothers raising babies by themselves.  The work that they do is worth more than min wage, when it is done right. The HHC agencies could get better help if they could pay them more.  

The start of another good day ha ha

I just can not get good help!  My PCPs either don't show up or they leave early or they don't do anything when they are here.  The girl I had on Thursday's and weekends is a 19 y/o that stood there and looked looked blank at you like a deer in the headlights of an oncoming car.  She didn't know how to cook anything.  That was her main job and doing laundry, which she didn't know how to do either.  She washed my best white towel with blue and black clothes so now it is gray.  The funny thing is this same towel was a beautiful yellow until a different aid bleached it!  Well last week she was a no call no show at her other client so she was fired.  The other girl that did 4 days a week was always a few mins. late and left a few mins. early.  She was always sick so you didn't want to be a hard ass and actually have her do her job!  As of today the company fired her because she was another no call no show for my visit.
Last week I had one substitute aid that stoled about $50 worth of cable equipment.  Of course I filed a police report and reported it to the home health agency.  I hated to report her because she is a single mom but if she is stealing from me what is she doing to her other clients that aren't all there mentally? Of course I will be reimbursed since they are bonded, but what a hassle. The new girl is going to be working from 12:30-2:30pm  That doesn't give me time to even go to the dr.  I'll have to cancel either my morning girl or my evening girl because I would have to be back home by 5pm some days  4pn.  Weekends they don't come until 6 or 7 pm.  It is really confusing.  Medical transportation lets me sit there sometimes for 3 hrs before they pick me up.
Transportation is a whole different subject.  I have been stranded for up to 4 1/2 hrs waiting for the ride home.  Sometimes the drs. office closes and I don't even have access out of rain or snow or to a bathroom!  I try to get rides from my church most of the time but I feel like I am asking them for way too many.  Sometimes my neighbor across the street takes me but I can't count on her to be there for me as much as I need either.  I can't drive because of all the pain medication I have to take to just be able to get out of bed and go to the dr. w/o excruciating pain.
I am bedrest completely right now except to go potty and to go to the dr.  I have to try to run my household from my bed, that includes training all the new help that keeps coming in.  I was just told by the sub today that there must be about 20 containers of leftover food in my fridge.  None of the food is labeled much less dated.  I guess that is just too hard.  I like my food put in glass jar in single serving sizes and then in the freezer but they put it in my sons plastic containers and he doesn't like that.  He has Aspbergers so that is a whole different story.  I have so many stories my best friend told me if I wrote a book it would be a best seller. LOL  She is serious but I don't believer her.  My life seems so boring to me, all I do is watch TV and talk on the phone and  stay on my computer all day.  I have NO social life and very few friends because I have been bedrest for 9 yrs.  This all started when I had a really severe case of shingles that left me with permanent nerve damage that make me feel like I still have shingles even though there is no sign of them.  I don't even have the scars any more, they finally went away after 7-8 years.  Now I am in the process of trying to loose 100lb that I gained while on Lyrica I begged my dr. to take me off of it and she refused so I finally changed drs. and I had a really good for a short time but then she moved out of state.  Now I am trying to train my new dr. to listen to me.  I know my body better than he does and I know when things are not normal.  He wouldn't order the test I needed so when I ended up in ER they did a MRI and found out that I have spinal stinosis (bone spurs digging into my sciatica nerves, which makes it extremely painful to walk, and I also need a rod in my neck).  I can't even get in to see the spine dr. until Nov.22nd because they book all Medicaid patients 6 mos. out.  I have lost 35lb since April 15 when the hospital took me off the Lyricia.  PTL at least one dr. listened to me.  It seems like like most of the drs. are brainwashed by the pharmaceutical reps.  Drs. NEED to LISTEN to their patients.  If I hadn't gained all this weight I could have already had my surgery from a dr. in the office that did my last surgery 3 yrs ago.  I started complaining about being really weak and falling alot 3 weeks after they did the last surgery.  The last dr. I saw while I was in the hospital said if they did the back before the neck it could make the neck worse and I think that is what happened.  The last surgery was also for spinal stinosis and a slipped disc in my back so they placed a rod in there. They told me 3 yrs ago that I would need my neck done someday.
I could probably talk all day but you'd probably go blind. So saying that please follow me as I'm going to try to post my daily experiences.
I sincerely hope the rest of your day goes better than mine did.