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?