A Diagnosis

As most of you readers know I created a private journal and for those of you who read that you already know what I am about to share here.
Since July I have blogged about the constant sickness I have endured. When I think back it all began in July following a dental cleaning. It started out with a rash on my leg which I was given cream for. Thing is, the rash was warm to touch and quite large. Hindsight is 20/20. I was diagnosed shortly afterwards with pneumonia and given antibiotics which were appropriate for that ailment. This was confirmed by xray as well as my later diagnoses. Since July I have been fatigued and short of breath. About two weeks ago Tuesday my internist requested another CT scan with contrast to see what my lungs looked like since I was not getting better and now a low grade fever and nightsweats had been added to my ailments. The CT scan showed a new pneumonia and plural effusion. I made an appointment with a lung doctor I saw the following Friday. He told me to go to an ER and get admitted that I needed intravenous antibiotics and that it was not normal to have pnemonia and breathing issues so frequently that something else was going on. I went to the ER and was admitted. They did more xrays and blood work and saw that my white count (indicating infection) was up again. The lung doctor was called back in and this time they added an infection disease doctor, a wonderful woman Dr. D. She immediately began to research the past and explore possibilities. The lung doctors were also helpful in ordering more tests and suggesting things. They did an echo on my heart and the results were nothing special but at that time they called in my cardiologist of five years Dr. Jack. You have to love this man. Dr. D had talked about an ETT where they basically go down your throat and use a sonogram type device to see the heart much better. Since I have an artificial valve they felt this should be done although none of them felt the odds were great that this was the problem. Dr. Jack said since several of them had thought this was something that should be done and I had the artificial valve he suggested we do it. The following morning I was taken for the test and although another doctor performed it, Dr. Jack was there and observing for himself. They found what the problem was. Irony of ironies, it was NOT the artificial valve that was infected but another valve, the mitral valve. Yes clearly there was something growing on it. That had been spilling into my blood and lungs causing problems. The few weeks I was on antibiotics got me a bit better until the last four weeks when things became even worse. I was relieved, yet scared, to know the diagnosis. What this meant was the following morning I had to have a PICC line inserted as I would need intravenous antibiotics for the next six weeks. I was given options. I could go to the hospital twice a day to their infusion clinic (visits had to be twelve hours apart) and spend a few hours there each visit OR I could have some nurses come to my house and teach me how to care for the line and do the infusions myself. Moment of panic set in but then I remembered that when my son was on chemo I had cared for his line, flushed it and this would be similar. I had the nurse come and the supplies were delivered shortly after I arrived home Friday in the afternoon with my new line in my arm. A hole in one's arm causes quite a bit of soreness. Kathy, the nurse showed me how, sat with me for the hour and a half it took for the infusion, showed me how to do the final flushes and close the line back up. Saturday and today I did all the treatments on my own, although a nurse did come to change the dressing on Saturday. That I am not permitted to do.
I am hoping/praying/meditating that these antibiotics will take care of this.
If not, I will have some serious decisions to make. Periocarditis is not something one can ignore. It's too soon to be feeling better but I can breathe easier. The fluid that was in my lung is gone now. I can walk upstairs without nearly passing out. I feel I am on the road to recovery. At times I become overwhelmed thinking about my grandmother who is no longer here to offer me her support and unconditional love. The thoughts of what could be are a dark place I don't want to visit. I've had open heart surgery and a valve replacement.
Positive vibes, caring thoughts and prayers are welcome. I will keep you updated as I can. I have to go back to the hospital tomorrow for bloodwork and will need that twice a week for the next six weeks.
Mostly, I am so grateful that the team of doctors found what was wrong and hopefully in time for the antibiotics to work and fix this problem once and for all. Either way I know this: I am one tough cookie. I will do whatever it takes because I love life and I'm not going to leave it without one hell of a fight. That you can count on.

Update

I got an authorization number today from my health insurance company for the CT scan with contrast. It looked so sketchy stating it was no guarantee of payment. Sheesh. I have my pulmonary lung fuction scheduled for Thursday.
After reviewing these two tests, the pulmonologist will decide what comes next. I persist in having the low grade fevers and the drenching sweats at night. I wake up freezing and soaked. Nothing is new. I am still lethargic and often when I try to catch a nap, the phone will ring. Usually something that I don't want to deal with. Going to go to bed soon.

There will be an entry in my private blog which I don't feel comfortable posting here. IF you wish to be added to that blog please click on the dog link and email me.

BRRRRR It's Cold!!!

Yesterday I ran out to get milk and the minute my ankles hit the chilly air I knew the temperature had dropped quite a bit. It snowed (although I think it was rather light) in Northern Jersey. It snowed in New York, although not in Albany where my sister is. It rained on and off all day yesterday and there are some sprinkles today.

My grandmother's funeral is Monday. We are heading out at 7 a.m. to go about two hundred miles. I find it a bit nerve wracking to have to wait so many days before the funeral but there were people coming from all over and the only other time available was Saturday at 10 a.m. That's early when people are coming from two hundred miles away. With my Dad in his present condition, we are going to get home quickly. He is angry that he is not being taken but that would be impossible. My mother had to get two different nurses and is having their friends, a couple, stay with him throughout the day as well. My father seemed unable to say anything yesterday that we could understand. It's frustrating for both of us.

I woke up suddenly at 5 a.m. and the asthma was kicking in. I grabbed the inhaler then turned on the shower and between the two it got quickly under control. It's hard not to feel a moment of panic now when I have trouble breathing. I instantly fear a trip to the ER, or worse, another hospitalization. I got my disability papers and I will get less this time because I received disability back in February for eight weeks. They base it on my yearly earnings and so far I am down seven thousand from last year. Getting sick is expensive. I really can't afford it.

Rob is going to be cooking tonight. He makes a recipe we got from Wegman's Menu magazine. It's sausage (using a low fat version) and peppers. It's really delicious and you have it over pasta. I use whole wheat now. Since I have been up since 5 a.m. I may need a tiny nap soon so that I can be awake and alert to enjoy my dinner. Hope you are all having a wonderful weekend and staying warm. Yesterday I spoke with my friend who is in Ft. Myers, Florida. She said it was 91. Is there anywhere that has a steady temp of mid 70s? That's my ideal.

She's Gone to a Better Place

Gang, my son Tom and I

Yesterday (Wednesday) at about 3:30 p.m. my grandmother left us. My aunt and cousin were by her side and said it was so gentle and peaceful a passing. She smiled, let out a breath and gently went to join her husband, who she said was waiting at her beside for days. She commented that he looked more handsome than ever. They were married nearly sixty years and in all that time I saw them argue twice.

Clara Virginia Wolfe Cosgrave July 15, 1912-Oct. 14, 1009

5 yrs ago (I have lost weight since this photo)

When I think of my grandmother (my older brother didn't say grandmother and he nicknamed her "Gang" which stuck for all nine of her grandchildren), I think of two words: unconditional love. There is nothing else more that a child needs than unconditonal love. My father was in the Navy and he traveled a lot. Many of my younger years were lived in her house, which by today's standards would be considered a cottage. It had two bedrooms. They bought the house brand new. At one point they put a small addition on it changing the kitchen to a dining room and adding on another kitchen, which was over the garage. The tiny lot had a steep hill and the yard was fenced in to keep us safe. My grandfather was a police sergeant. He was one of the first motorcyle police on the white Harleys for Montgomery County, Maryland. At that time, policemen didn't make a lot of money but whatever they had was shared and stretched and all were welcome in their home. There were eight children in my grandmother's family and often for Christmas she would prepare a huge meal and they would wander in throughout the day. She was a wonderful cook and no matter what she had, it was turned into something delicious. Gang was so proud of her two daughters which were twelve years apart in age. When we lived there at one point, my brother and I slept in the dining room and my Aunt Judy was a teenager. How I idolized her and her records. She was a huge Elvis fan. I have only wonderful memories associated with my grandparents and their home.

My grandmother lived to be 97 years old. That is a full life and she had a wonderful life. She was able to remain in her home until the very end, a promise made and kept by my Aunt Judy. It was a huge sacrifice for her but she made it.

The final plans haven't been made but we will be going to a funeral service and burial only in Frederick. All Gang's family is buried there and she will be laid to rest under a double heart headstone with her Les.

I feel so very blessed to have had her for each and every day of my life. I was born one week early of her 42nd birthday and I was her first granddaughter. She said that was the best birthday present she ever got. Gang was there for me when I came home from the hospital after my spleen was removed, was there for some of my radiation treatments, was there to celebrate my son's birth, was there to encourage my son with his chemo treatments and was there when I had my open heart surgery. There was not a time I needed her that she was not there. Of all the grandmothers I might have had, she was the perfect one for me. No matter how much I grieve her loss, it will never diminish what she left me.

I am a better person for having been a part of her life. Isn't that a wonderful legacy?

Autumn Has Arrived

Yesterday I decided to run out to the local grocery store for a few items. I wore my leather clogs and once my feet hit the outside air a chill swept through my entire body. I had a jeans jacket on over a sweater but even with the heat on in the car, I was not warm. I quickly moved up and down the aisles and got back home so I could put on the thickest, warmest socks I could find. What a great feeling to have your cold feet warmed up. It is really cool and not very sunny today.

My mouth has improved greatly which has brightened my outlook. I feel shakey and it is difficult to write with a pen. I have to assume that is steroid related. I am still using two inhalers that contain steroids but I finally ended the pills.
Last evening I received a call from my cardiologist office. I had an appointment and with all else going on I had forgotten. They rescheduled for next month and were very understanding. I need to call the dentist and see if he can squeeze me in. I am a few months overdue and now want to be certain that my mouth is in good order. I get my teeth cleaned three times a year per doctor's orders.
Last night I had a nice meal ready when Rob got home. Haven't done that in a very long time. Usually he is home two hours earlier than I am. He worked an hour overtime which gave me longer to prepare. I made a delicious mac and cheese with smoked sausage in it. I make it the old fashioned way, using a white sauce that I make. Yes, I know, not very healthy but very tasty.
I made an extra and he delivered it to my parents. Tonight I am thinking I might make chicken marsala. Haven't had that in a long time. I really enjoy cooking when I have time. When I am working that usually means weekends only. I am hoping I will be going back to work rested this time. I am still tired, still having some restless nights which sometimes include waking up in a sweat. I haven't slept through the night in many months. I hate waking up so tired. It feels like I drag through the days like this. I keep telling myself to be patient and to just take it easy and let my body recover. I have never been good with delayed gratification. You would think by now, with all the times I have been forced to have patience, I would be better at this.
I am thinking of treating myself to a new down comforter. The Company Store is having a sale and there's are the best. My old one is worn and my darling dog grabbed the end with his teeth. Although I sewed it shut again there was a dusting of feather/snow everywhere and that part seems empty. There are few feelings like slipping under a down comforter on a cold winter evening. They are so light on your body but keep you so toasty warm.

Serenity Now

I am a huge fan of Seinfeld and if you are too you will get the title.
This weekend my sister came into town and I was so excited she was coming. Unfortunately, my brother's wife also decided to pick this weekend to stay at my mother's. The real rub is that SHE never called my mother, she had my brother TELL my mother she would be staying there. My mother immediately told my brother "this is NOT a good time for her to come." My brother said he passed that message on but she still came. (She has not spoken to my mother in months) My brother couldn't give my mother any details. My mother, who has been dealing with my father and my recent illness and her mother being in hospice care is on maximum overload. Said sister-in-law did not give my mother any agenda and showed up Friday night to sleep there. My mother who never has a bad or confrontational word for anyone has cried more tears over her frustration in dealing with this. She is very frustrated with my brother for allowing his wife to do this. We have been waiting daily to hear that my grandmother has gone. My sister who always looks forward to the time with my parents, and time with me has had to endure this visit as well. My sister had surgery about a month ago and is not 100% herself. You have to wonder why someone would impose themself on people under stress. I guess they just want their own way and don't care how they inconvenience others.

My mouth sores have sufficiently healed so that I am down to two remaining. Yesterday I was actually able to eat a meal! I had made some London broil and was able to slice it paper thin and have it with some gravy. It was pure heaven. I also enjoyed a few crackers with cream cheese and olives. The most troublesome of the sores is on the top tip of my tongue. It was the first and will be the last to heal I think. The thrush has cleared up nicely. My wheezing is infrequent now and I am deffinitely getting stronger...finally. I am far from the normal me. My legs still feel weak. I have lost over ten pounds in the past few weeks. I am still weaning off the steroids and have boughts of emotional or moodiness though they quickly pass. I am hoping my white count is dropping. I have not had a lot of sleep the past two nights. I have been up since 5 a.m. when a neighbor's car alarm went off. Yesterday I was up at 6 a.m. and that was the first day since I came home from the hospital that I didn't have a nap all day. The phone rang at least twenty times yesterday.
My beautiful Fall is here. I am so happy so have the brisk morning air. We have some Halloween decorations out. Not decorating like I used to. I live in a development and will have about one hundred trick or treaters. Most start about 4 p.m. when I am still at work. I already have treats purchased and waiting for my little goblins. I must say that these children are so polite it is a joy to see them.
Lately I have been keenly aware of manners and the lack thereof. Certain visitors to my mother's house are really annoying me. They don't call first, they just show up. My father is on a regminented schedule. They come at his mealtimes (or ours) and stare while you are trying to eat dinner which often then gets abruptly halted. Do people possibly think this can be appreciated? I made THREE attempts to visit with my Dad when people showed up, unexpectedly and stayed. I would never a. drop in on someone or their family without the courtesy of a phone call or b. drop in empty handed at meal time (several of his visitors do this as well.) Each time I left, not wanting to be near people I don't know are not sick. These are not young kids either. In fact, several are senior citizens. Sorry I will now put my soapbox away. I just hate illmannered people.

Coughing but Better

Remember Sesame Street? Today's show is brought to you by the letter C as in cough. I wish I could stop coughing. In the morning I use the Advair inhaler and then as needed I use the Proventil. Both seem to be giving me heart palpitations which wore masked by the steroids. As I reduce them, the palpitations are more present. Overall I am feeling a bit stronger each day now. Now I want to get my focus over to the good stuff of the Fall.
This summer was a huge disappointment to me. It's as though it was not. I never had one day that I truly felt well. I did not go out to eat at the shore, walk on the beach, any of the things I usually do. Since working my present job I have not had ONE vacation day. Each day off has been used for illness (except for two days where I rushed to be with my Dad after one of his strokes.) I am so hoping for a mini vacation but not sure when/if that will happen. I am deciding that I must have some quality time/relaxing hour respites. This weekend my sister is coming. Haven't seen her in a month. She is always a huge help to my parents. We fit time in to visit and those are rare and treasured times. This weekend is a holiday weekend for her so she will have an extra day here. I am determined to find a few hours where we get out for a bite to eat and some sisterly chatting.

A brighter day

I am finally starting to get better. The sores in my mother have lessened. I still have some. The ones that are most problematic are in my throat now. My tongue is finally so that I can eat. There is some discomfort but after losing eight pounds over the past two weeks I can finally eat something and it doesn't all taste like chalk. Woohoo.
I am still very tired. My blood tests show my white count is still quite elevated. I am to be resting the next few weeks. I am being weaned off the high doses of steroids that were first iv, then oral. I am continuing to use two steroid inhalers and will have to for a while. For the most part I am not wheezing but there are times where I still am. The doctor is disappointed in that. When I lay in bed at night it;s the worst. The inhalers help but they cause bad tachycardia for me which is especailly troublesome when trying to sleep. Do I ever sleep. I have never in my life slept this much. If I sit still for ten minutes I nod off. I nap throughout the day. Twice I have gone to the grocery store in the past few days. It is very difficult to have the energy to get a dozen or so items. When I am home and put them away I must take a nap. I am not used to this. Today for the first time in nearly a month I was able to go visit with my Dad. His speech and confusion seems even worse. At least I got to spend about an hour with him before having to come home. Not sure how long this huge energy issue will last. I am hoping that when I have my next blood work done on the 19th that the white count will be significantly reduced and my energy returned. Coming off the steroids makes me feel strange at times. I have gotten highly agitated over minor things which is not like me at all.
I am going to see what's on TV and then call it an early night, as I usually do.
My Fall is here and I am loving the cool evening breezes. Sitting here with the window open and soaking it up.

May I have some cheese for my whine?

I have been sick over two weeks now. I am tired of being sick and tired and mainly of these God awful sores all over my tongue and down my throat. Nothing is helping them. I am also weening off the steroids. I feel like something which is not me. I am brought to mind over and over all the sufferings of the many friends I have and sometimes it brings me to tears.

My grandmother is hanging on in her home with my aunt caring for her. The hospice people say she will not let go, she is fighting every second. She is 97 and I would think she would be happy to think that rest will come and peace. I feel so badly for my aunt who is not well herself and trying to take care of someone who is medicated and argumentative. It almost makes me glad that I will probably not live into my elder years.

I am desperately searching for something to eat. Firstly, everything takes chalky and awful. Secondly even yogurt hurts to eat. I had burns in my mouth from radiation and the doctor had me crush aspirins in applesauce to coat my throat so I could eat. If I get desperate enough perhaps I will try that. I pray I never have to take such high dose steroids again but it seems likely. I am going for a huge bloodwork up on Monday. My white count needs to come down significantly. I'm usually an optomistic person and a fighter but right now I feel so weak physically it's hard to find that grit that I can usually grasp onto. Maybe tomorrow.

Posting For Nelle

Most of you know Nelle was sick last week. Early Monday morning she made a trip to the E.R. with respiratory distress. She was admitted with bad bronchitis and breathing problems. She is still hospitalized but hoping to come home in the next day or two.

She is now suffering from 'Internet Withdrawal' and will be back online ASAP.

(Posted by Rob, her husband)

Another Round with Illness

Last Monday I left work with a terrible sore throat. It felt like it had razor blades in it. I woke up Tuesday and decided I could not go to my job and speak all day on the phone with my throat hurting so badly I could not swallow at all. I had another ordeal to deal with. The IRS had sent a letter saying that my 2008 taxes were never paid. I had ignored that first letter because I KNEW they had been paid. Well when I received a REGISTERED letter from them Monday evening I learned otherwise. Thankfully I was able to call them on Tuesday. What I learned was that my accountant had sent me TWO sets of vouchers (which get submitted with payment.) One was for the full amount to be paid now and the other was a set to PREPAY for 2009 the amount divided by four. I wrongly assumed that the four vouchers were the choice of making several payments instead of one big payment. They told me that they would put a hold on the account. They were going to levy us. I told her that I would get the money to them ASAP. Thankfully I had an emergency account that I could take the money from and send it. Here is what I consider to be the ridiculous part though. Once I explained and they realized what the problem was they said the money could NOT be moved from one account (2009) to 2008. I explained we will not have this problem and the money would not be due then as my husband was out of work half the year. "Sorry" she said "but you did send the payments with the vouchers you did and wrote the voucher numbers on the checks as well."
I called the accountant and at first I was annoyed. I reread the letter accompanying the vouchers and there was a reference to the vouchers but for someone like me who had no idea, I don't believe they explained it adequately.
He offered to try to assist me but I told him since I had been threatend I was not comfortable doing anything other than complying. A few days later the logic of the thing hit me. I should have known money for last year would be 2008 NOT 2009. So next year I should be receiving a nice tax refund. Unfortunately, if I run into an emergency that won't help me.
But I digress..........getting back to work. On Wednesday I went in and managed to blow my nose several hundred times and annoy all my coworkers that I was there. They all know the strictness of our attendance policy. The one girl who was first sick (and was there each day for five days coughing and sneezing and spreading germs) is a single mother. She cannot afford to lose her job for too many call outs and our boss told her if she left sick it would count against her.
The boss got sick first. He came to my desk several times and then by Tuesday I was pretty much sick. Somehow I made it through Wednesday but Thursday I woke up feeling rather dizzy. I had breakfast, went to work and seemed okay until I stook up to walk somewhere. I slumped to the floor, feelilng I was passing out. I came into the meeting room and my boss and coworkers were concerned. I was wheezing when breating, my nail beds were purple and my hands were shaking. They asked if they could call 911 for me. I begged them not to. I got my doctor on the phone who told me to come right in. She was upset when she saw me saying I should have come in sooner. My chest sounded like the right lung had pneumonia again. She gave me meds for pneumonia and sent me to the hospital. The hospital said I did not have pneumonia. She put me out of work Friday. I am still running a fever, coughing uncontrollably and worried about not going to work. I wake up at night, soaked with sweat. I am just never catching up. Because of the attendance policy so many sick people are at work. This causes other people with health issues, such as myself a major problem.
I have been awake an hour. I need a snack and more sleep. I am hoping to get better. All summer I didn't have one day for the beach. All my work times goes to sick time.

Rain slowly clearing

We will be leaving shortly to go have dinner at my mother's. My sister has invited us, my brother who lives next door and his wife. I have made a few simple things to take with us. This morning I suddenly realized that I had not had my INR tested in nearly seven weeks. I am supposed to do this every four weeks and be rigid about it. I messed up. Went to the hospital this morning and got that done. There were police officers all over that area checking to see if people were on cell phones. I have a bluetooth device for when I am in the car and need to be talking on the phone, which I don't do often. I was pulled over and asked if I was on the phone. I told the officer I was not and offered to show him my cell phone was in my purse which was unopened. He told me it wasn't necessary and sent me on my way. I then mailed bills and went to the mall. I used to love Macy's. Now they have coupons that increasingly limit what they will cover. I waited in line ten minutes only to be told that it would not cover a shirt I was buying because it was some kind of special buy. How would I know this? So...I went back and found other things that would be covered and stood in line again. I had forgotten to bring my card so each purchase required fishing out my driver's license and feeding my social security number into an electronic pad. I had a gift card that I was finally able to use and got some good deals but the lines were not easy. People tend to get testy in these situations.

I wanted to put a link here to the most wonderful blog where my friend (and artist) Judith HeartSong published pictures. THE ART OF TEA is a blog showing the clever and creative minds of several artists. Some of them defy description, at least by me. We own several teapots and Rob loves to use a diffuser and make a strong pot of tea. I also like tea but do not feel the decaffeinated ones are as good.

It is wonderful to have another weekend. They are my job now. That is when I can take a deep sigh and relax. During the week life is much too hectic. I hope all of you who are reading this can take a deep breath as well and enjoy some ME time. We all need that. Have I told you lately I appreciate you? If you take time to come here and share my life, I appreciate that time and YOU.

A Fabulous Day

Yesterday Rob and I had a simply marvelous day. It began with pulling our Halloween stuff out of the attic. We have two containers full. Each year we usually add one thing and often they are things gifted to us. For my birthday in July my sister-in-law Stephanie gifted me a black cat decoration. Rob loves all cats and we use them a lot for Halloween. After we did that Rob took down and washed the living room miniblinds. We have found using dish detergent in the tub works best. I took down my little valances which I love and saw that the sun has ruined them. I need to find replacements. That lead us to go to Bed, Bath and Beyond and they had nothing I wanted but we ran into a former next door neighbor and her daughter. This was a two year old when we met her and I was shocked at how lovely and tall she is. We then went to the mall and had a delicous lunch at Ruby Tuesdays. I had a glass of sangria that was delicious. We picked up some soaps and candles then I called my brother who lives about ten minutes away. His wife was seriously injured in a car accident about a month ago. She is very sweet and this has been so hard on her. She has had to have artificial and human bone put into the leg. She still cannot put any weight on the leg and is in a wheelchair. She has to sleep in a hospital bed and isn't allowed to go in public because she cannot afford to pick up any germs. We had a nice visit and I took her a fall candle. On the way home we swung by the Coach Factory outlet. I had wanted to go there but heard it was still very expensive. I was talking with a coworker on Friday who told me she picked up a pocketbook for $80.00. I was really surprised because in the mall they are at least $300.00.
We pulled up and there was a LINE of people waiting to get into the store. They said it was due to fire hazard safety. I waited about ten minutes and found a beautiful handbag with all the discounts I think it was $120.00 but it is all leather. It is beautiful. I have never had a Coach bag and always thought I would like to own one. I decided to splurge on myself. I rationalized this because I had used all my birthday money to pay bills. Now I am pretty much caught up.
We came home and just relaxed. That is something I don't get to do very often.
I am going to finish putting out some Halloween decorations today. Hoping for another relaxing and enjoyable day. We wanted to have my mother take Dad to the beach....there are areas on the boardwalk you can sit and it is wheelchair accessible. We can take his aid along as it is only about a 40 minute ride. My mother thinks it would be too much trouble. She is also embarassed about how my father acts. That really annoyed me. I told her people can see he has had several strokes and anyone who would be bothered by that does not concern me. She has always been so concerned about appearances. I don't know if her generation was raised to be this way. Many of my friends mothers are the same way. When my father gets upset he curses repeatedly. This doesn't happen that often but she just gets beside herself. Another thing I have never understood, these are just words why does she percieve them as being so powerful? There are other words I detest but they are usally words used to insult, hurt or show prejudice to people. A word used to express anger or frustration does not upset me. Anyway, hoping for another good day. I have really enjoyed this weekend thus far and now for the bonus day.

private journal

I am going to be making a private journal with entries that will be shared with friends as opposed to a public journal. I am going to be setting that up today and all readers I currently have their emails for will be automatically invited. I do not have everyone's emails though....so if you would like to be added to that list just send me an email to: McJerseygirl@gmail.com and if I know you, you will be added. The explanation of why I am doing this will be the first entry.
If I have neglected to send you an invite and you are a regular reader it is only because I don't have your email addy so please send it. I am not going to stop writing here, just things that are more private will be in the other journal.
Have a great Labor Day Weekend!!!!

September 3rd and 4th

Today is September 3rd. The first man I fell (really fell) in love with, passed away about seven years ago, before Rob and I were even married. We had met as teens and as I grew up a bit I could see things that were going to be real problems for us. I broke up with him (he did not make it easy) and shortly afterwards married my first husband. He begged me not to marry him, telling me that he was the wrong person for me and in hindsight, he was right. I spent many years wondering how things might have been. He found a woman who was right for him and had a good life with her and their two sons. Sadly, he was a heavy smoker from an early age and this lead to him having lung cancer. While he battled it courageously from those I talked to, it was probably diagnosed late. I think of him throughout the year but especially on September 3rd. This would have been his 58th birthday.
Tomorrow is the anniversary of my son's diagnosis with leukemia. It was the day after Labor Day that year. I will never forget seeing the school buses (the hospital was located across the street from a Catholic school). I was keenly aware that my son might not start school with them. Later that morning we learned he had leukemia and that he needed immediate hospitalization to begin an intensive chemo regimen. What was not anticipated was the reaction his body would have and for the next four and a half months we practically lived in the hospital. The few times they sent him home did not last and within a day or so we would be back. After the second month I came to feel that the pediatric ward (adolescent wing) was my home away from home. The other mothers and nurses were my support team. Many friends shied away, and the ones who tried to keep in touch, simply didn't understand. He never was able to go to school that entire year. He did get "passes" from his doctor to attend a bonfire and such activities. I will never forget driving him there and parking where he couldn't see me...sitting there and crying for joy that he could have a few hours to be "normal". Every year since then, when I see the school buses picking up the kids that first day, it is very difficult. This is the first year that I did not break down and cry. My son is still with me. I am so very fortunate. He will never be the person he was before. He has an overwhelming sensitivity to the plights of others which sets him apart from most people. He is keenly aware that he is different and thinks people look at him differently. There are no outward signs except for his scar where his Hickman line was removed. Most of the scars are deeply hidden. He can talk to me about it, knowing I went through my own battle. I know this. My world forever changed that day. Facing the possible mortality of your child is overwhelming. I was luckier than many because I still have my son. I will always be keenly aware though that none of us have a guarantee. I want to go back and be the naive young woman who never had to think of those things. A part of my innocence left that day. I mourn that each year around Labor Day. It was better this year though, for the first time.

Weekend Wrap Up

I really shouldn't take the time to do a quick post but I shall. I'm just enough of a risk taker to believe I will then get ready in record time for my periodontist visit this morning. Deep cleanings there are like well, torture with a slight numbing agent on my gums. I have had gum issues previously and I have to be vigilent about keeping germs out of there as it can cause big valve problems for me. I also have to take antibiotics to have the procedure done as a precaution. Not a big deal anymore but just another thing to remember.
The good news is............
1. I have a paid day off of work making it a four day work week and since next Monday is Labor Day that will make two consecutive four day work weeks. woohoo!
2. Today is my seventh anniversary with Rob.
Yes, seven years ago I married the unique person known as Rob. I could never describe him and do him justice. I might embarass him because he is very manly with other guys and I see a soft side that I'm sure they never will. We have been through a LOT together. We were only married two years when he had to go through the heart surgery with me. That was a rough one. They once called him at two in the morning and he nearly had a heart attack. His goatee starting getting gray hairs that day. I have given him a lot of gray hairs.
In each marriage there is always someone who gives more. In my first marriage it was me. I gave and gave and got little in return. With Rob, we try very hard to keep it even. We share housework etc. Due to my health issues, Rob has had to give a lot more than any husband should have to.
Rob and I have shared a lot of sadness as well as laughter. Right now he is giving me daily support as I am seeing my grandmother and father slip away.
This weekend my father was especially troubled. He seemed to be in pain and I could not figure out what was wrong. His communication skills are worsening. I ground up a tylenol for him and put it in milk. After a few minutes he seemed better. I cared for him Saturday and Sunday so my mother could get out a few hours each day. It is a difficult situation to care for someone who is so physically helpless and cannot communicate either. Ijust do the best I can when I am there and constantly reassure my mother that she is doing the best she can and noone can ask more of her.
Well time to get ready. Later this afternoon I go for my mammogram. I am overdue on that. With my history, shame on me but at least I am doing it now.
Fall is coming. How I love the Fall. The beauty of Fall, the fun of Halloween, and the spirit of Thanksgiving, all setting the scene for the holidays around the corner, just lighten my spirits.

Another Belated Birthday Wish!

Note to self: put birthdays on calendar for next year
Happy Belated Birthday to Ronni!
Ronni has had a difficult year with her second bone marrow transplant. The past month seems to find her getting back to a somewhat normal life...finally.
Ronni I wish you a wonderful year ahead filled with all the things you most love, time with your children, time with Maddie and time with your sister and many friends. Hopefully this time next year will find you playing tennis again.
Wishing all the best today and always!!!

Off to babysit Dad today so Mom can have some time off. It is really getting to her having the caretakers showing up late, sometimes not at all. She is the primary caregiver 24/7 to someone who has a childish personality. She is 77 and finding it hard to cope. Dad, who never allowed fowl language in our home curses nonstop....one of the few things he can say clearly. It's driving her up the wall. In the meantime her mother is on a steady decline two hundred miles away. Tough times for her.

Belated Birthday Greetings to Susan

One of my readers, who has become a friend through Facebook as well had a birthday on Sunday. Real friends never ask your age but by the pics I could see we live in the same neighborhood.
Susan is a joyful, vibrant and compassionate person who has had her share of medical battles this past year but still knows how to get the most out of each day. I wanted to give her a "shout out" to say once more
HAPPY, HEALTHY, PROSPEROUS YEAR AHEAD AND MANY RETURNS OF YOUR SPECIAL DAY! YOU ARE ONE ROCKING 2ND GENERATION MOTHER
(not using the G____mother word cause you're just too young! hehe)
Hope your day was as special as you.

Restful Weekend

I am a bit in a rush this morning. I have showered but my hair still needs to be blown dry and the makeup which is taking longer and longer these days still must be applied for the mental health of those who work around me.
I really kicked back on Saturday. We did pick up new wooden blinds for the bedroom which Rob hung. Took down the curtains and those got taken to the cleaners. (Which means when I get them back I will air them out before rehanging.) Room looks good. I actually took three naps on Saturday. I was promptly woken up by the phone each time. One call was from our local newspaper which I have asked repeatedly to stop calling. I can read it online and I do not wish to have to recycle the paper anymore. It's a major inconvenience. Sorry Asbuy Park Press but you should privatize your site and charge for access. I might pay.
My fluid level has improved due to a RIGID diet on my part. It's bland and unappealing but it is working. I still have the fluid in my lung but other than wheezing when I lay down it's not a major ordeal.
My Dad looked really bad yesterday. I won't go into the details but he is on a steady decline. Sometimes it hits me really hard as it did last night. Other times it doesn't. He screams out in pain from his legs hurting. It's so stressful to see. I am not sure how much longer my mother will be able to have him home if he continues to decline. My mother always hated cursing. He curses nonstop now and that seems to upset her more than anything. It's like the ONLY words he correctly pronounces are the ones that were always forbidden in our house. While there is something that amuses me about this, it drives poor Mom insane. Another work week has arrived. Time to grab some breakfast and finish preparing for the day ahead. Hope you all have a wonderful week and remember to appreciate all the things you are able to do. My sister-in-law Leslie is better but looking at a minimum of a four month recovery at home. There are so many people who are deprived of the simple things we take for granted, such as walking. I am going to try to find time to go visit her soon. Sometimes someone giving their time to visit means more than anything else.

A Reduction

Finally, yesterday, Monday, the fluid began to improve. I could get my feet into regular shoes. It took four days of lasix for this to happen. I am remaining on it for awhile. At least my calves are not throbbing any longer and my feet are not numb or feeling as though bees have stung them.

I am in a funk. I needed to call the doctor today but did not have time at work to do it. Computer issues which have persisted are adding stress to my days and at this point the last thing I need is more stress. I will have to call the doctor tomorrow to get word on other tests I have had. If I am truly honest, I am sick of illness, doctors and tests. My son came over Sunday and began to lecture me. I know he is well meaning but I just need a long vacation which is not a possibility. Not if I want to keep my job. My August day off is spoken for with several doctor visits being crammed into the one day. Having my mammogram which is nine months overdue. In September I have three doctor visits scheduled in the evening. I will be lucky if I can make it there from work in time. I am not my usual optomistic, perky self. There are lots of things I could go into but not in a public blog. I am thinking of making a private blog. Not that I really have time to blog mind you............

Frustration thy name is fluid

Last week when the fluid issue began I was not all that concerned. When it happened before I took lasix (then potassium) and problem solved. This time it is not working. When I was in the hospital post heart surgery I had THIRTY POUNDS of fluid on me. Hadn't eaten in ten days so it might have been more. Anyhoo I had a line in my neck which they shot the lasix into intravenously. Within ten minutes and several gallons of fluid leaving I was okay. For that week I had to have the lasix daily. Eventually this resolved. With the oral medication this does not seem to be resolving. At this point the only shoes my feet will fit into are flip flops. Cannot go to work like this. I am not eating any salt and I have lowered my fluid intact. I did go to a lab 7 a.m. Friday to have some blood tests made. I will contact the doctor Tuesday for results. I am miserable. My feet alternate between hurting and going numb. Going up and down my stairs (which I did four times this morning already) is very hard on my feet. Yesterday I went and sat with my father for four hours so my mother could go out. The entire time my feet were propped up on their sofa. When my mother came home I came immediately home. I have done nothing this weekend and I have a dirty laundry hamper filled to prove it. I am beyond frustrated. I keep fixating on what is wrong and how I will be able to go to work and get this resolved. I keep thinking that I left my mother-in-law two voicemails telling her I was upset some two and a half weeks ago and she hasn't even bothered to call. Haven't spoken to her in FIVE weeks now since I was first diagnosed with pnemonia. I know that I have to let that go but right now I am not feeling well and it's harder to do. I know I could go to the ER and they would tell me to contact my doctor. Going to go lay back down in bed. I have been up three hours and Rob is up now and can take care of the animals.
Usually I am good at coping with illness but I am sleep deprived and miserable.

It's Thursday.......

I know I haven't bee blogging like I did. For one thing, I feel so tired and things are hectic when I get home. To be honest, I am having some real physical issues right now. I am experiencing breathlessness. I get out of breath walking across a room these days. Since this was one of the things that led to the pneumonia I left work two hours early and went back to the doctor today. (I lucked out because if calls are slow coming in they OFFER us time off unpaid, this is the only way I am allowed to do this barring an emergency.) Got to the doctor's and she could see I was full of fluid. I don't think you can imagine how full. My feet are so swollen they were bulging out of my summer sandals. My legs are hard like bricks swollen to the max. They have been like this and painful for days. The only relief is laying on a bed with them elevated and not on a floor.
I kind of knew what she was going to say. Sometimes I wish I could be ignorant regarding these matters and be able to delude myself. I have never had that ability. I am a realist. When I had my heart surgery I went into kidney failure for over forty-eight hours. If it persisted another day I was going to need dialysis. I was lucky enough to have my kidneys start to work on their own again. By this time I had a kidney specialist on my case and he warned me that I might have problems later. Nah. Well, the fluid is either an indication of a kidney problem (will be tested to rule that out) or the very beginning of another problem. Something concerning the heart. That's all I want to say for now.
Right now with my grandmother under hospice care, my father severely disabled and my mother on the verge of losing it, I have to put the importance of this on the back burner. I will have tests done and try whatever medication will fill the bill but I can't let it overwhelm me.
On really bad days I have to remind myself that I won a battle for my life over thirty years ago. Each day since then has been a gift. I have to live it one day at a time and make the most of each day.
My biggest concerns are not for me but for those who count on me.

The weekend draws to an end.............

There were some great moments to this weekend. My niece who I did not get to see emailed me for the first time. Only a few lines but it brought joy to my heart to know she is thinking of me, as I do so often of her. Last night my sister made dinner (she is at my parents for another four day weekend) and invited us over. Her friend, a therapist, was also a dinner guest. I have known him many years and he always has some good stories to tell. Of course the names have been changed to protect the innocent, and actually the not so innocent sometimes. My father has began to curse. Not unlike someone with a well known illness. He gets frustrated and blurts out four letter words that my mother absolutely forbade in our home. She has a strong and immediate reaction which seems to spur him on to do it even more. Last night she began to yell at him and got very upset. I must tell you that this is quite funny to witness. My belief is that words are just words. In my home we never ran around cursing all the time, but I never made it such a huge thing either. My son never went wild with cursing but if a words slipped out here or there I just ignored it. We have all advised my mother to do the same but she refuses.
Tonight I began to cough again and I am wheezing horribly. Use of the inhalers does not seem to be helping. I am hoping with all my being I am not going to have a pneumonia relapse. I have read that stress can contribute to this and also once you have had pneumonia you are more vulnerable to having it again.
I will see how I am tomorrow. I have used up two of my four times I can call out for the year which doesn't end until March. I keep hoping they will revamp this policy.
Other than that I really stayed home. Was home all day today and most of yesterday. Trying to just relax as much as possible.
Our anniversary is approaching at the end of August. Trying to think of something that I can afford which will put a smile on Rob's face. He is quite appreciative I must say which makes giving him anything a pleasure. Seven years. We have known each other ten years and he is still here. I know it wasn't easy moving nearly three hundred miles away from the town he had always lived on, friends and family. He is now a proud New Jersey homeowner. Most of the time, life is good.

Hoping for a good night's sleep

I have found it difficult to sleep lately. For one thing I have a nagging pain below my left breast. I am wondering if it is a muscle that was strained or something else. I am taking ibuprofen for the pain but I am not supposed to take very much of it. When the pain prevents me from sleeping I bite the bullet and take it as I have the past few nights.
It is very hard to get my mind to turn off. I never did hear from my mother-in-law. Not a single word and it's been nearly a week since I left her the messages. Obviously, she doesn't seem concerned that she hurt my feelings. I guess that tells me everything. I did send my niece a note explaining how terribly disappointed I was not to get to see her. I wonder if she'll get that note. Rob and I have discussed this at great length. My son wants me to delete my Facebook page because he feels that it is entirely too stressful for me to have something that can cause such upset. I have reconnected with several people on it and would hate to do that. I did send a letter of explanation to my husband's aunt who posted. Just to clear some things up. It is obvious that things have been said from one person's perspective. Do people not understand that most things are skewed by each person's perspective?
I have to get up early tomorrow as I did today. Today I left my house an hour early so that I could mail a photo album I made for a friend's daughter. The friend had passed away and I duplicated all pictures I had for each of her daughter's. The other daughter was thrilled with hers. I also picked up a birthday cake for my boss and took it to work. It's been a long day and I am so tired. Just hoping and praying for a good night's sleep.
I have friends who are being supportive, a husband who loves me and my family who love me...... why do I feel so alone at times? My sister is coming this weekend. I look forward to that and a chat with her friend who is a therapist.

Yesterday was a rough one...........

I have to back about ten days to start this story...........
About ten days ago I commented to my husband that it seemed odd we had not heard from his Mom since July 8th. She called to wish me a happy birthday and I was in bed newly diagnosed with pneumonia. Didn't talk to her. I tried calling her back about a week ago and got no answer. Left a message saying it had been quite awhile since I had spoken with her. Mentioned this to Rob a few days later who said she had said something about taking a trip to Michigan around the end of July. Now I am thinking is it really possible she would go on this trip and not call and say goodbye or don't worry? Rob then tries to call her cell phone number to discover it has been changed and he doesn't have her number. He then calls his cousin in Michigan and low and behold she is there! She only talks to him a few minutes but mentions on her way home to Rhode Island she would like to swing by and take us out to dinner. I am so excited at the very chance that I am going to see Cassie, our ten year old niece. Because of several things (my job only giving me ten hours off a month for sickness, vacation etc and they are ALL used for illness), my Dad's health which has gone down the toilet in the past year and financial reasons (Rob just went back to work, and even at that, he took a pay cut). I love this little girl. I met her when she was about eight months old and barely walking. I watched her at her grandfather's wake so her Mom could greet visitors. I adore her. Her Mom was only thirty-three when she died of cancer and that night I laid in bed with her while her grandmother, aunts and girl cousins went for a final visit. I dressed her for her first holy communion as her mother requested and watched the pain on her Mom's face as she was unable to do it. Her Mom told her to always let me help her and that I would always be there for her. I have tried, with all of my being to live up to that request. Her first birthday without her Mommy she turned nine. We drove up to Rhode Island and I had an American Girl doll for her with the furniture and stuff. She was thrilled beyond words. There is something about this child that from the MOMENT I saw her melts my heart. Even to see her for a few hours would be a wonderful diversion from my grandmother's final days and my Dad's illness. The night before they were to come my husband got a phone call. She wanted us to meet them at four. While Rob could do that, I could not. I work until 5:30. She told him they could not wait for me. Rob at first said that he couldn't make it either then. When he hung up I told him that IF he could make it without me, he should go and see her. The next day his mother called him on his cell phone at work and told him that she wanted him to meet them at the mall at four o'clock and they would grab a quick bite and leave. He agreed to do that, texted me and I said sure, go ahead. As the afternoon wore on I got a literal pain in my stomach. It is one thing to know that this little girl is hundreds of miles north but she was literally in my back yard this ONE day. It was unbearable to think they would not wait. I texted him..no answer. I asked if I could leave work: NO. As I began to drive home I was overwhelmed with grief, then hurt and despair. WHY could they NOT wait? I just kept thinking of how this little girl had spent several days with her mother's cousin and in the Spring several days with another cousin. Why wasn't she spending time with us? I called home and Rob said they had left from the mall. I didn't have my mother-in-law's cell phone so I called her house and I left a message. I told her how very hurt I was. I might have cried, I know my voice was breaking as I told her how I felt that we deserved to spend time with our niece. Later I came home and I made a post on my Facebook page" I am very, very hurt that I did not get to see my mother-in-law and niece because they wouldn't wait two hours." Next thing I know one of my husband's cousins posts a post that I am attacking her mother (NEVER MENTIONED), her aunt and portraying them as heartless and cruel. Please reread my post. This could not be further from the truth. Several of my friends made posts saying I had not done this which seemed to incite her to make yet another post which was unkind. It went on and on and tonight I deleted the entire thread. What gets me is that she completely overlooks what was done to us. Rob spent ONE hour with his niece and I had no time. But she drove her across the country to see her mother's cousin. (Please don't misunderstand these cousins are wonderful people and we love them).
Rob made a post stating that his mother took two trips in the past few months and both were to see cousins. Today his aunt replied with a post to his post stating that his mother has asked to come and we always tell her it's not a good time. This, sadly, is not true. Last June, 2008 she wanted to come. We were committed to a wedding in Philadelphia of my childhood best friend. Had we not gone, friend would have been hurt and we would have lost the deposit on our room. She never called again. We had begged her for years, nearly once a month to come and each time we were told no, she couldn't get away. Right now my evenings and weekends are filled with trying to help my parents. My sister-in-law, Leslie who was also helping is in a rehab. Her leg bones are shattered. She has synthetic bone and cadaver bone implants. She is having it very rough right now.
Perhaps I am selfish but I think that my mother-in-law could have said "If we stay to see you, it will be late. Can you put us up for the night?" We have a guest room with a queen sized bed and we have a comfy sofa. It would not have been a problem. I wish I had been given some notice of the trip because I could have tried to get special approval for that afternoon. However, they seemed intent on only being in our area ONE hour. They live five hours away. I don't understand why we were not allotted more than ONE hour. I"m sorrry but I am still hurt.
Perhaps what is even more hurtful is that noone wants to admit that we were not given any real thought. Regardless, I missed an opportunity to see Cassandra. I have to honestly say that I think she is the one who lost the most yesterday but not having time with her uncle and aunt. How sad is that?

Last week........in review

Last week was quite eventful in many ways. I made a few posts about my sister-in-law, Leslie. She has had surgery to repair the femur and the other bone (sorry I forget). They had to put a piece of cadaver bone in the leg. They are hoping to get her to a rehab tomorrow although she won't be able to stand on it for quite a while. When she gets home she is going to need round the clock nursing care for awhile. This was very serious. We are concerned but honoring her request that noone visit her except for her parents, my brother and her children because she is in a lot of pain from the pins and grafts of bone. I just wrote her a note and a card. I will wait until some of the attention dies down before doing something for her.
On another note I had a very positive experience. I was chatting with a friend from high school who found me on FaceBook. She was telling me how she stays in touch with the son of a friend who passed away many years ago. That struck a chord because I lost a very dear friend in 1986. She had hepatitis as a teen and then had out of control high blood pressure which noone realized was from liver failure. She was sent to a hospital for testing and she coded from the dye. They resuscitated her but then told her she had a short time to live. She was only 34 years old and she had two young daughters. On top of that her husband had just left her for a younger woman. She was working two jobs. I got a call on a July morning as I was returning home with groceries from her older daughter. She was 14 and told me she had found her mother dead. We were both in shock. I kept in touch with them but at some point we lost touch. It was heartbreaking when I last spoke with the father of the older daughter who told me she had just had a baby (she named after her mother). The younger daughter was having some really difficult problems and he was putting her in boarding school. I won't go into details but it has been over twenty years since I communicated with them.......until this week. I found them both on Facebook (actually through their father's account). I emailed them both. The older one still has a lot of anger over losing her mother and seems to blame her. I think she is confused. No doubt over the years she heard her father's accounts of things which would have varied from mine. On Saturday I made copies of many pictures and sent them and the last gift Kathy bought me, to her younger daughter, Dawn. I have to tell you I held that tiny gold pair of earrings and I cried each step to the post office. I hated to let them go but I knew that they were meant to be with her daughter. Her daughter had a lot of questions for me about her mother, and also about her father that she never met. Her parents were divorced when her daughter was an infant. I have them back in my life. The older one seems very stand offish and I am hearing a lot of what I consider propaganda that was told to her being repeated from the younger one who does not believe it. As I licked the envelope I whispered a prayer to my friend that she would send love in the envelope and let the girls feel her love for them. I believe love transcends time and space. I believe that I was meant to get in touch with these girls again. I think it is part of a healing process that Dawn is going through. I feel very blessed to be a part of it in any way.
Weekend was hectic and hurried and at one point my computer desk fell apart. Hubby had to fix it with more screws but feet broke off of keyboard and I am always wanting the feet OUT to use it. We'll see how this goes.
Saw Dad today and several times he just laughed out loud. That is food for the soul. I am capturing all of these things and tucking them away to remember when I need them.
Hoping for a good week.

Update

Leslie had surgery about dinner time yesterday and had some pins put in the two large bones in her leg. The doctor is saying she might need an artificial knee cap but right now they want the leg to heal and the swelling to go down before doing extensive work. My mother said they told her she will have to work with a cane that the leg was so badly damaged it will never be the same. Please keep her in your prayers.
Glad the weekend is here. I have had a difficult week. I am tired and went to work yesterday right after a shower .Didn't have time to dry my hair or put makeup on. Of course I ended u having to be in two meetings so I felt very uncomfortable. I have never gone to work such a mess before. Coworkers insisted I did not look that bad but honestly I was very self conscious. Trying to get some extra time this morning to make a much better appearance today. Thank God it's Friday. My sister is going to be here this weekend too. That means I have to worry less about my parents. My brothers were in New York and I had to run errands for my mother several days this week. That included buying things like adult diapers and I wasn't sure what to get and it took a lot of time. Thankfully my parents had a pretty calm week and my mother handled it better than I thought she might.
Weather is lousy and I have a lot of aches and pains in my chest where I had my surgery. Pain around the heart is always difficult to ignore. Hoping for some extra sleep and sunshine this weekend.
Now tell me how YOU are...........

Life is very hectic

My life is so hectic with being back to work, running errands and trying to help my mother. I have almost no time for myself right now save the hour I may steal to check emails and facebook.
Please say a prayer today for my sister-in-law, Leslie. She was in a bad car accident yesterday. The car she was driving was totalled and her leg is broken in both of the major bones as well as the knee cap has been damaged. The swelling was too bad to do the surgery they had planned about dinner time yesterday. I am concerned she will regain the use of this leg. She is a very busy woman and always helping others, particulary her parents. Her coworkers all know her to be the one to help them when they have had babies or surgeries. This is also a trying time for my brother, Bob and their two teen aged children. It will be hard to be focused on work today but I must. I have two events already and am only permitted four in a YEAR. Just learned that anything else we do counts as part of this point system so if you do anything improperly on your job this can be considered points. Don't know why this was all combined but it was.
Will try to post an update on Leslie soon for those who wish to keep her in your prayers.

Saturday........

I woke up again at 5:30 a.m. It's a curse upon my head. Dog and cat both were sleeping until I woke them up! I am so happy it's a weekend. I did manage to go to work yesterday and I felt so much better than I had. It was a bit hectic there for a Friday but I managed to get through the day.
My brother and his wife (who live next door to my mother) have chosen to spend the weekend at my mother' s mountain vacation home. Yesterday they babysat so my mother could run errands before they left. My middle brother's wife came over and babysat later so my mother could get her hair done. She also supplied dinner for them so my mother was feeling a bit spoiled. I was glad to see them doing those things for her.
I find I am semi addicted to a game on Facebook called Yoville. You are given a virtual apartment and some starter pieces of furniture. Then you can clock into the local widget factory and get paid every six hours. If you have people join your crew you get more money and promotions. You can shop at the town's fashion shop and the furniture store and even a pet store. I aspire to own a dog but first I want a house with a yard for him to play in. There are several style houses you can buy. The trailer is the cheapest, then a ranch, then a cape code, then a gothic and then a modern house. The modern house and a tree house must be purchased with YOdollars. Yodollars must be PURCHASED with real life credit cards. Seriously. One of the bosses where I work purchased her modern and made it a swanky beach house. I am old fashioned and like to work hard for what I get. To tell you the truth though I am tempted to spend ten dollars and speed up the process. Just when I thought I was mature enough to experience delayed gratification. Life is short. Who knows what will happen in Yoville." Won't you please, won't you please, please won't you be my neighbor?"
Fred Rogers, lest you forget.

$100 later...........

OK yesterday I waited all day for my doctor's authorization for CAT SCAN to go through. It didn't. My day that I tried to rest had my husband's car being fixed and delivered. Later realizing that someone else's car parts were in it, had to drop those off and I came home. I still felt really crappy and made husband a steak and when he was done told him I needed to go to the ER. When I arrived it was a slow night. Thank God. Still they hooked me up to some monitors and they did lots of tests, including blood cultures. They did scan my lung. The pneumonia has pretty much cleared up now. I have another few days of antibiotics. The scan showed I have scarring in my lung from many years ago.
Basically, they think I should return to work on Monday but should rest until then. They gave me IVs which seemed to help me. We didn't get home until after midnight. Poor Rob had to get up and go to work today. Tomorow is pay day and I should get my regular check. Two weeks from now I will be missing a week's pay. I only had 4 all purpose days which I will have used last week. We also had a hefty car repair bill and ER cost me $100. I can't let myself get too upset over this, I need to rest and heal. Going right back to bed after I get some breakfast.
CONGRATULATIONS TO SUSAN ON THE BIRTH OF BABY JOSEPH THAT HER DAUGHTER HAD THIS WEEK. WISHING THEM ALL THE BEST AND WISHING JOSEPH A LONG AND HAPPY LIFE.

UPDATE

Ok, here's the thing. Went back to the doctor yesterday. She listened to my chest and doesn't see an improvement. We talked about a few things. I am at higher risk having pneumonia because I am diabetic, because I don't have my spleen, because I have the bionic heart valve. Those are three factors. That's a lot. My age also works against me. Damn mother nature. My breathing does not feel better and my head feels both confused and dizzy. Just read those are also symptoms. Apparently my right lung (which has always been the troublesome one) has a LOT of fluid in it. The lung itself, and now fluid are infected. The crazy part is that I am not running a fever. I do have crazy and almost constant chills but my body refuses to run a fever. I have NO cough. My body does not seem to be doing any of the things it could to help me in this battle. The pneumonia is large according to the radiologist who saw it. At this juncture
(for all those political followers) the doctor feels I need a CAT SCAN. My cat refused and we are waiting to hear from my insurance company (who actually is really good, United Healthcare) to approve it. Then I will schedule it ASAP and find out if the pneumonia is larger than it was a week ago. IF it is, I am in deep doo doo. I will probably have to go inpatient and receive IV antibiotics. IF I get sicker I will have to regardless. Wonderful as my bionic heart valve is, should it become infected it means I would have to get it replaced. YIKES. No thank you. You can imagine how serious that surgery is and we won't even discuss the pain involved. So, I wait. I distract myself from worry by playing a few online games and taking lots of naps. Cause sleep is good for me. I also distract myself with snacks, such as the most delicious diabetic candy on Earth that Jennifer sent. Honestly, it is the first I would buy myself. The other stuff I tried was awful.
Yesterday Susan sent me a beautiful bracelet in the mail. You ladies are spoiling me now. In all honesty I have loved receiving those two packages. I cannot go out, cannot drive myself anywhere. Thank God for neighbors out of work right now who insist "Just call us". Hubby's car brakes went and his car is in the shop getting new brakes and an O2 sensor. Long overdue.
I will keep you up to speed. IF I get hospitalized I will try to borrow a laptop.

Still Sick

I have been awake since about 1 a.m. I had to call out of work today. I hate doing that but I am going to try to see my doctor again today. My chest is hurting. I couldn't sleep last night due to chest making noises and my heart racing. I want to make sure the pneumonia is gone or at least better.
Yesterday my sister went home, back to Albany. It was so hard for her to leave and very hard for my parents to say goodbye. She was here three weeks to help them. She is having surgery in about four weeks herself. She has been handling all the bills, referrals etc for my mother as well as doing all the shopping and meal prep. She is one high energy woman. Now my mother has to do this. Of course I will help when I can but I don't get home until 6 p.m. and dinner will be over by then. I am hoping that I can just go be with Dad and give her a chance to go out at least once a week. She seems so old suddenly and frail.
Well, going to crawl back into bed. Hoping for a better tomorrow.

For a few hours of good sleep

I have not gone to work for three days. You would think I would be well caught up on sleep. NO WAY! Yesterday as soon as I got to sleep the doctor's office called for blood test results. Back to sleep and a few short minutes later my grandmother called to see how I was doing. At this time I got upstairs and came down for a cup of tea. My sister called from a specialist's office to another doctor' s phone number. This went on ALL DAY.I signed into Facebook figuring that is a stress free activity and then the IMing started by one friend. I have been through so much with her. She is married to someone I begged her to get away from. After he abandoned her while she was having surgery in one state, she managed to get back here. While I was going through a divorce, she wanted to live with me but I said no. I did buy her groceries and help her. Next thing I knew she was back with Mr. Trouble again. She won a lawsuit and he wanted to get married suddenly. They did and I wasn't invited to the wedding. Shortly afterwards he took her money, her car and was gone again. She let me know but then backed off for a long time. Now suddenly she has reappeared on Facebook and is looking for more support. I have told her several times that I have my hands FULL. Yesterday when she wanted to tell me all about this guy I told her I have been down this road with you so many times. Your kids begged you not to do this and here you are again. I'm sure she wanted help. Sorry. Not going there again. She saw a friend of mine on Facebook and began talking to HER. That irked me. I have now blocked Facebook IMing. I need this like I need another lung full of fluid. I am going to shower and see if I can get a nap in. I am wiped out. Mentally and physcially.

OH NO :O

Folks I just can't get a break right now. (Except that I know some super people like Jennifer and Susan and others who always add some sunshine to what would be dismal days). I have been having problems breathing and for the past few days it was worse. I left work early yesterday hoping to get in and see my doctor. Couldn't yesterday but did today and she thought I had pneumonia. In my right lung (it's the troubled one apparently). She sent me to the hospital and sure enough the thing is filled with pneumonia junk. Now I will be out of work the entire week. Thank God Jennifer sent me a basket containing lots of sugarfree goodies (Thank you Lord!) and it will be on my night table. At times like this I pray for a laptop to magically appear but sadly it doesn't. Maybe Santa but that's a few months off. So I am gasping for air at times. Those times are when I make any movement. Thankfully I have a handicapped parking tag so my voyage from the car to the x ray department was only about a quarter of a mile in which time I felt sure I would collapse. I was almost tempted to steal a hospital wheelchair but I frown on stealing. So, for the rest of the week I will be around. Can't say I will be enjoying myself. I feel run down and my oxygen intake is low right now. There is a birthday cake on it's way to me. I know this because Rob would NEVER not get me a birthday cake. Just praying it has strawberry filling. I am only going to have a small piece. Pinkie swear.

A late night

Haven't been sleeping well at all. Last night I was awake from 3-6 a.m. Then fell back to sleep for 45 mins before going to work. Today I was allowed to leave early without pay at one. I went to the hospital for my blood level check and then rushed home. I watched the Michael Jackson memorial. I went through a lot of Kleenex. Called my mother who was at an ultrasound test with my father, Bryant the caregiver and my sister. They stopped for pedicures on the way home. Bryant (God bless him) lifted Dad so that he could soak his feet and have his massage and nails cut. They were very gentle with him and they got back home safely. Once there the doctor called. They ordered the ultrasound because my Dad groans and sometimes yells when his arm or hand is touched. This is the paralyzed side which happens to be the right side. The ultrasound showed tha he has bone tumors in the hand and arm. They are pre-cancerous tumors but they are on the bones and have the characterisitics that they are becoming cancer. Two years ago they removed a large cancerous mass from his liver. So now, things are even more complicated. We are trying to find a bone specialist who can inject steroids to lessen the pain when he is moved. He seemed so much worse today. Nothing could please him. I tried to imagine what it would be like to lose the ability to communicate. He is now insisting that all doors be closed (you cannot imagine how much effort went into figuring out what was disturbing him so but we finally did. He wants overhead fans on but no windows opened either. My mother refuses to put on the air conditioner and it was stifling. I couldn't stay long. I came home just not knowing what to do with myself. My birthday is tomorrow. My mother thought it was today. It will not be a happy occassion. I am grateful for all the support I get from friends and family. I just pray now that God will ever so gently take him. I want his suffering to end.

Day After

Our July 4th celebration was very low key. We cooked out at my parents with my sister and her friend. Dad's meals have to be pureed and he can't have everything so he had a variation of what we had, traditional grill food, corn on the cob, potato salad and regular salad. All of us are so tired. My mother, sister and I are all waking anywhere from 4 to 5 a.m. It annoys me so that the few days I could sleep in, I just can't do it. Yesterday I crased at 11 a.m. and slept until 1 p.m. I was recharged a bit. We came home around 9, spent some time on the computer and again crashed early. It just doesn't seem like July 4th when there are no fireworks and my sister almost always goes to see them. Everything seems to be off kilter these days. My sister has been here for two weeks. She has used her time off. Not sure if she can, but she is hoping to stay a few more days. I cannot see how my mother can handle this. My sister had hoped to be supportive and show her what needed doing. My mother wants to take a backseat and just have her do it all. This has been frustrating for us. There is one paid caregiver and if she has to hire another it will be so very expensive. All of this gets paid "out of pocket" as it is care, not rehabilitative therapy.
I was so thrilled that my husband got in some overtime on his new job. I was able to make a big payment on a credit card balance. Hoping to have that paid off by summer's end. I hate carrying a balance but sometimes life hits you with things that lower your income and raise your expenses and it's just a necessity.
I need to run back to the grocery store again today. I make a list, take the list (well most of the time anyway) and then get home and when putting somethings away have to hit myself and say "OH I needed THIS." With two adults and two pets we always need something. Might I say our pets are spoiled. The cat has rejected some treats that look like grass when at every opportunity he grazes like a cow. The dog will eat any treat we buy him but has allergies so we tend to get him the same things all the time. He will "dance" for a treat. We could never teach him out to sit. He flatly refuses but he'll dance. Go figure.
I am so enjoying three days off work. It's been a mini vacation almost. I wish I could slow the days down. I feel like I am fighting off a cold. It's in my chest too and this morning I had to use my inhaler. I cannot afford to be sick and miss work.
Oh and on an interesting note. This year my mother decided my birthday is July 7th. For all the previous fifty years it has been July 8th. My sister and I also came across a book my mother got before she was married (58 yrs ago). In it she recorded all of her son's birthdays but neither my sister's or mine. Ouch.

Not such a bad day

Today I was pretending it was Wednesday since I have Friday off. At work I had some training (I am happy to work for a company who does provide us with a lot of training when changes are made) and then had to meet with my boss for a career plan. He really surprised me with a nice comment about how patient I am with customers. That made my day. It was pouring out when I left work and I called my mother and told her I would stop by on my way home from work. (Last night I came home first and two different neighbors came over and I was so tired and never made it over there.) When I got there my sister had made delicious reubens for us all (a somewhat healthy version with low fat meat and a healthy homemade faux Russian dressing). Dad of course has only pureed food and his caretaker was with him. As soon as we were done he began to scream. He is having frequent muscle spasms in his legs. It was terrible. At first he allowed us to massage them then didn't want them touched. I crushed up an extra strength Tylenol which he managed to get down in some pudding. He was utterly miserable saying things which we struggled to understand. We asked if he wanted to go to bed because it was 7 and he said "Yes" so he was ever so carefully placed in bed. His bad arm was so painful that his gentle giant of a caregiver, Bryant, suggested we leave his T shirt on him. Don't know what we would all do without Bryant. He is huge, like a football player. He is a gentle man in his early twenties. He is patient and kind. We hired him through a service and I'm sure he doesn't get the twenty dollars an hour my mother is paying. He is worth every penny. Had some quiet time with my sister to chat. Something is going on in Albany which will allow her to stay a few more days. She is taking care of everything for my mother. Since I cannot get that kind of time off I am so relieved and grateful that she can. She is attentive to all of my father's needs. My mother feels she is spoiling him but I don't think you can ever spoil someone in this situation. I just hope we can find a way to deal with some of his muscle spasms. A physical therapist is coming, nurses etc. He sees an internist next Tuesday and I am hoping at least by then.
Thank you all for your kind and caring comments you leave. I don't have time for friends right now and you provide more support than you might ever guess.
The friends at work always ask about my Dad and show real caring too.
A three day weekend is coming and I need it. I may try to suprise my mother by showing up with stuff for a cookout. Not sure yet. We take it one day at a time...sometimes we have to take it one hour at a time. That's okay though cause we are still managing. Somehow we have the grace we need for each day.

Monday, Monday can't trust that day

For all who don't know the title was a song by the Mamas and Papas. Knowing that classifies me as a baby boomer.
Weekend was hectic. Rob worked on Saturday for overtime and I took the dog to the groomers, cleaned the house, did laundry, visited my mother and sister for awhile and got groceries. I also prepared a nice dinner. I was exhausted and in bed by 9. Sunday I slept until 8 a.m. strange for me but still woke up tired. I am so far behind on sleep. I took it a bit easier Sunday although my Mom had a really bad day, called at 9:30 and was overwhelmed. My sister had run to the grocery store for about an hour. She has been going out more and more trying to get my mother used to being at home alone with my father. My mother is questioning every decision she ever made at this point. I don't think at times she understands that I simply must work. We cannot make it without my income right now. I get off ten hours a month and since I can only take off 4 unscheduled days per year I must be careful with them and use them only for serious illness. I can schedule other time off in advance but I need to give several weeks notice for that. Emotional meltdowns cannot be scheduled.
Today starts some new changes at work. Schedules have been changed for many coworkes. Mine remains the same due to medical restrictions. I am trying to just go with the flow, do the best I can at my job, supporting my mother, etc. but doing it all without getting too stressed out. It's difficult.
Today I woke at 5 and I am sitting here, having showered but I still need to dry my hair, get dressed and have breakfast and it's nearing 7:30. That leaves me 45 mins to do all this. There are not enough hours in the day. I have messages from friends who are complaining I don't call them. If I call them there is nothing much to talk about right now. My life exists reliving the same day over and over. It's a long and tiring day. I just can't fit another thing in. My only escape is my half an hour or so I spend on Facebook catching up and playing games. That is my ME time. My Dad is the same, talking less and seeming frailer. It seems he is leaving us ever so slowly....but all the same he is leaving us. I never thought it would be this hard.

So very tired

I have been going to work so tired. Then I drink coffee to compensate, elivating my blood pressure. Then I have been having some carbs to boost my energy which backfires and I feel crummy. I have to stop all this. I have been trying to go see my Dad every night. After working (I have gotten stuck twice at work this week, getting home almost an hour later than usual) all day I am pooped. While I may not want to admit it, I am a bit old to be working full time then trying to fit something else in at the evening. I know my mother (and currently my sister) are eager to have me stop by. Thing is, they can nap during the day. I can't. Work is very stressful at times. My company is letting a lot of people go. I have to be on my best at all times. My legs have been swelling from fluid and heat.
I need to be going to bed earlier and getting a full nights sleep. Haven't done that in over a week.
Dad seems to be adjusting okay to being home. He gave them some problems yesterday and they sat down and had a long talk with him. They told him that if does not cooperate he might have to return to the rehab center/nursing home. The place is VERY nice but my father was very upset when he learned how expensive it is. You could live in a very nice hotel for that price. He has agreed to try to cooperate. He is 185 p0unds of almost dead weight. To move him is very difficult and my mother is paying someone to come three times a day. He is a wonderful young man but his agency charges a lot. You cannot care for someone who is this disabled for less than thousands a month, even at home.
I think my bed is calling me. I am so very tired and thankful that tomorrow is Friday. I need a few days off. Hubby is working Saturday which will leave me more time to spend with Mom, Dad and sis. He'll be making overtime and I am hoping to pay an early car payment once in awhile when he has overtime. I was told that my "disability" insurance company who was going to make the car payments cancelled my policy. They refunded the money to the car financing company. This was based on information one of the doctor's sent. Oh joy.

The weekend flew by

The weekend just flew by and I am exhausted. Work tomorrow too.
Dad came home in the ambulance and was immediately placed into his new wheelchair. He seemed to like that he had a much nicer one than the rehab had let him use. It reclines and everything. When I first asked him if he was glad to be home he quietly said "Maybe". These are the things that are so difficult. Seeing a man who was a Navy rescue diver and afraid of nothing now fearful of a change of where he will sleep. He seemed not to recognize many things around the house. Granted some changes were made to accomodate him. When upset he makes this noise which is similar to crying but he is not crying. It is so hard to hear. When he gets tired he is very difficult to deal with. We managed though. It's like you have a young child with almost no speech. He sometimes just laughs at nothing and cannot understand why we are not laughing with him. Often I find it is just easier to laugh along. He is situated in his new room, formerly the living room of the apartment attached to their house. This apartment has it's own deck which we took him out on today. Beautiful breeze once it stopped raining. We got him a Father's Day cake and he had to have a slice pureed but he enjoyed it. All things considered, we had a nice day. He was pooped out and was in bed asleep by 7. He did spend some time with his youngest son and his two other sons wished him a Happy Father's Day over the phone. My sister and I had the priviledge of spending most of his waking day with him. My husband spent several of those hours with him, as did my son.
Well time for bed and hopefully a peaceful night's sleep. Thank you all who have prayed for Dad and for us. We had a memorable day, and it felt like such a gift.

D DAY (as in bringing Dad home day)

In one hour an ambulance will arrive at the rehab and take my father home. It will hopefully be his last ambulance ride. While the ramp was put on the house (actually the initial one was too steep and another contractor reworked it), the sidewalk has still not been poured. It's raining, rained most of the week which meant that was a no go.

When we told my father he was coming home today he seemed VERY unhappy. We asked him "Don't you WANT to come home?" This was all he talked about the first week there. He damanded we take him home immediately back then. "NO!" The social worker and medical staff tell us sometimes they get attached to where they are and do not want any change. My mother promised him if he is not content to be home, we will bring him back there. "OK." He refused to let me kiss him goodnight last night. He was mad. I asked him if we had gotten on his nerves (my mother, sister and I) "YES" and he affirmed that he wanted us to go home. It's really hard to have him be angry at times.
I will be going over there and seeing how he is doing about two o'clock. Wish me luck.

I was so much older then...I'm younger than that now

I remember a quote about children judging their parents and rarely forgiving them. My Dad will be coming home from the rehab on Saturday. The next day will be Father's Day and in all likelihood it will be his last. I used to be so scared of my father. He was a tall and large man. He had a short fuse and he yelled. I didn't live in the same house with him until I was in fifth grade. He was in the Navy and travelled all over while we stayed with my mother. Sometimes we were near Naval bases and others we would stay with my grandparents. When they built a house around the block from my grandparents on the outskirts of Washington, D.C. we were in our glory. We had my grandparents a short walk away and our own house. We moved in when I started kindergarten and lived there through my fourth grade year when we moved the following fall to N.J. It was heartbreaking for my grandparents. It would be the first time we would actually have my Dad around for more than just weekends. He landed a great job in New York and we just had to make the move. We bought a house twice the size of our old one and for the first time my parents actually had money. It felt strange. My father worked a lot of overtime at Mount Sinai Hospital. We adjusted although we were two hundred miles from the rest of our family. My Dad was from Louisiana and was an only child. We only saw his parents about half a dozen times during our childhood. They would never fly and the drive was too much. I was at their home twice in my life.

I have been doing a lot of thinking about my childhood and adolescent years this week. When I was younger I was so proud of my father for coming from nothing and doing so well. He was intelligent but his deep Southern drawl was something kids made fun of. In high school kids would say "NAIL, can you rustle me up a tall glass of iced tea?" and laugh hysterical. Now, I see people look at my Dad with pity and sometimes an unpleasant look and I want to defend him. He is helpless. That breaks my heart. For Father's Day I want to do a cook out. My mother thinks it might be too much for him but I have it all worked out in my mind. I have come to realize this: you only get one father. He can never be perfect because none of us are. As you mature you know and see his faults. At some point you have to forgive in order to be at peace with yourself. At the point forgiveness comes, you find that you have peace. It's a wonderful thing.
(This is MY personal experience, I realize not everyone could or should forgive.)
For many years I hoped my Dad would ask for my forgiveness for certain things. He never did. It would have been so much easier to do it had he asked. He always favored his sons. I always knew that it would be his girls who would take care of him when/if the time came. His sons do help in other ways but they find it so difficult to see him like this that they can only take small portions of it.
It is a hard thing to go through. Somedays I wish I had a crystal ball. Heart failure is not something that can be measured by an xray. We live from day to day never knowing. Each day I wake up thinking what a gift it is. One more day of and I list all the things I enjoy. My job is stressful but I am very fond of some of my coworkers. I struggle at times to make the payment but I am thankful to have a nice, dependable vehicle to get to work and other places in. My pets drive me crazy at times but they give me affection at times I need it desperately.
I have wonderful, caring neighbors. My sister and I have forged a new relationship that has come out of this situation. It's stronger than before and I find that my friends don't really know what I am going through but she does.
So much good has come from this that I believe it is all part of the larger plan somehow.
I remember when I was 19 knowing I knew it all. I now know I know very little. Each day I learn a little more. I am more open minded now than every before.
We live, we learn, we grow.

Winding Up the Weekend

Weekends go by much too fast. I have accomplished so much though. Early this morning we were up and off to our local Wegmans. If you don't have one near you, you cannot imagine all that they have to offer. We got fresh corn that was like it was just picked amongst other fresh things. After our order was packed into our trunk we went to Starbucks and used a card that was given at Christmas. We had delicious breakfast sandwiches. Quick trip home to unload the car and I was off to my mother's. My sister and I emptied out my mother's huge freezer downstairs and the two freezers (part of refrigerators) upstairs. What a job. We threw out two huge garbage bags of old food! My father kept buying food like there was still a household of 7 and not 2. There were some four huge packages of hamburgers that were in there two years. Things were never rotated and since they ate out so much they just sat in there. We managed to completely organize what was left and we cooked a few meals and even some pie that was on the cusp of being outdated. My mother came home to a huge pot of sausage and peppers, a fresh baked apple pie and a pot roast in gravy. She won't have to worry about meals for this week. My sister will be returning Thursday and staying for a week. The difficult part was me hauling this huge amount of frozen food upstairs (in large coolers) then transporting it to my car trunk, then to a dumpster where it was unloaded. I cannot lift more than twenty or so pounds at a time and it was a chore. I also cleaned out my mother's kitchen cabinets and organized them. Her kitchen looks like a model home. We'll see how long this lasts. When the kitchen chores were done I went over to the nursing home to see my father. Rob called to tell me our house phone was dead and not working. My father wanted his dog to visit so Rob brought her over. He quickly lost interest and we had to take the dog away. He gets frustrated that the dog doesn't seem happy just to gaze upon him. The dog is easily distracted by any other people in the area. After a visit I headed home and called the phone company. They kind of talked me through testing the outside box. We have FIOS and there are jacks you plug the phone into. If it works the problem is inside not outside. That jack did work so then we had to systematically try each phone and now all seems alright. I made some thick pork chops and fresh corn I had picked up at Wegmans. Also made some delicious freshly made mozzarella topped with fresh tomatoes and fresh basil. Over this you drizzle olive oil that has had garlic added to it. Yummy. A wonderful warm weather delight. Rob cleaned the kitchen and we watched a little tv. Now it's time for bed. It was a quick but very productive weekend. We have the company selected who will provide the caregivers. The ramp has been rebuilt and hopefully this week the new sidewalk will be poured. Things are prepared. Don't know how much longer Dad will be with us but things have been done to make this time as easy as possible for all involved. My mother is scared about bringing him home. We have assured her (my sister and I) that if she cannot handle it, we will find another way. Her home is cleaner and more organized than ever before and I am hoping that will give her spirits a big boost.

Soggy Saturdays make me sleepy

Yesterday I had a very interesting visit with my Dad. My son was there when I arrived and was happy to see him doing some puzzles (childish wooden ones).He was very insistent he do what he wanted last night and let me know it. When I tried to wheel him back towards the building, he stomped his foot and placed it so I couldn't move his wheelchair and let out a boisterous "NO!" I was so happy that I actually bent down and basically told him he was doing great by letting his thoughts be known. He then tried to speak and I guessed at some garbled noises and when I got the right answers he was thrilled. Here is the really funny part. He said rather clearly "Talk to me" and I said "Okay Dad, what do you want to talk about?" Again clearly "tennis". This kind of through me as we have never discussed tennis before and with the small vocabulary he has I was stunned he would say that word. "What about tennis?" "Lessons" this is when it took every ounce of self control I had not to laugh hysterically because he looked serious. "Hmmm Dad have you ever played tennis?" A grin and he said "Maybe." Oh. "Well Dad not sure what else there is to talk about with tennis other than my friend Debbie plays it nearly daily." Again "Lessons". I then reluctantly asked if he might be thinking of taking tennis lessons. "Maybe." I then tried to talk about something else and he later said "tennis lessons". Okay.
You gotta laugh and sometimes I laugh and cry at the same time. So did my mother when I relayed our conversation.
Today Rob went to work. Since he had only worked two days this week he decided it would be good to pick up an extra day. My sister, my Mom and I interviewed agencies that send in visiting nurses and healthcare people. It was draining to go over all that has happened. My sister helped her take down the levolor blinds and clean them, wash the windows and wash and rehang the valances. The house is getting spruce up and we have to bring him home by June 20th. That is the same day of my nephew Ryan's graduation party. His party is at 5 so it will be rough to make it. I am thinking maybe I'll stay with my Dad and let my mother go. My sister will be here then too.
Don't know why I am so tired except for one reason: the rainy weather. Nearly all week we have had rain. I want some beautiful sunshine. Hope we get it for tomorrow. If so I plan to redo my last Sunday schedule: early walk, visit Dad then take it easy.
In the midst of what sometimes feels like chaos, I feel a strange peace.

Almost Time for Bed

I like to be in bed by ten p.m. cause I am old and grumpy. No, seriously I am worn out by then. Now being woken up even earlier when someone leaves for work. YES, WORK! First day at the new job went very well. They actually decided to give him more money than the original offer. Still, less than he was making but hey we were really happy about that. He seemed to like the people and new environment.
Today I was leaving the cafeteria and someone yells "Hey McLoving" and I turn around like "HUH?" and this guy is standing there with a strange look on his face. Someone I don't know. I ask him who he is calling and he points to some pardon me, geeky looking guy. He says he looks like a character in the movie called McLovin'. I tell him my last name begins with McL and I thought he was talking to me and we both cracked up and so did the geeky looking guy. For a minute I thought I still had it. Well, to be honest, I figured it was some smart ass that I know trying to be funny. Now it's time for bed and some sweet McDreams.

off to work...........

HI ho........hi ho........it's off to work I go...
:::::whistling:::::::
hi ho...hi ho.