Saturday, January 28, 2012

New Blog Look

Today I got a yearning to update the blog look. I get bored with the same look all the time although I did love my lil snowman. I haven't been feeling well today. When the weather is rainy, warms up, then turns cold it has a negative impact on my lungs. I am also having ongoing stomach issues.
Yesterday was my mother's 80th birthday party. I got completely overwhelmed. I was worried with three brothers and four nephews we would run out of food. I made THREE pounds of baked ziti! It was really good and we had four pizzas and salad and honey barbequed chicken legs, wings and breast pieces. Delish. There was more than enough and my mother will have leftovers for the entire week, even with company! I cut my finger slicing bread and with the blood thinner, it bled and bled. I got exhausted and thank God that midway through the food prep my son called, told me I sounded tired and he was concerned, and he came to help me. We didn't leave a dirty pot or pan and he carried all the food to the car and into her house. I couldn't have done it. Everyone seemed to have a nice time. I also bought a cheesecake for my aunt who is visiting. Her birthday was in September and she had never received a birthday cake. We wanted her to feel special too. I think it worked :)
I'm glad my mother had this birthday. I don't think I will be able to do anything like this again. Today I ache everywhere, am short of breath again etc. I slept ten hours with oxygen overnight but still am not where I should be physically.
I am on an emotional roller coaster which seems to be out of control at times. One minute I find myself very depressed and the next just determined to fight to the very end which will be a long time away. Reality sets in and I grasp that this is all unknown territory. I KNOW that I have a fatal illness. That illness can cause sudden death or respiratory failure which takes years. Noone knows why some patients live so much longer than others. I read that because I no longer have my spleen my lifespan will be shorter as well. My family seem not to grasp any of this. My sister came to my mother's last night and hugged and kissed a sister-in-law and when we said hello, we weren't even acknowledged. I just don't get that. My oldest brother has been calling a lot, he made it a point of hugging me and offering to help etc. He and his wife bought us a special Christmas gift. My middle brother and his wife are loving, kind and supportive but have had their own stuff to deal with this year. My youngest brother came to my door last week but it was an odd visit. His wife didn't want to exchange gifts this year she said but then showed up at my other brother's with gifts for his family but not for mine or my sister's. This is the one my sister acted so happy to see. I don't get these people, I really don't. I am starting to let them go. The ones that can't see beyond themselves....I couldn't treat an acquaintance the way some of them have been treating me. I know that someday they will be sorry in the long run but I find no comfort in that. I have to focus on the people who have chosen to be there for me.

Monday, January 23, 2012

The Value of Friends

Last week I had lengthy conversations with two different friends. My friend Monica I met when I was 19 and she was older, married with 4 children. We worked together. She has ALWAYS been there for me....through cancer, heart surgery etc. It's been mutual as I have always tried to be there for her, as when her husband died. Speaking to her is like getting a deposit in my emotional bank account. She builds me up and encourages me. We talk about her problems but she doesn't dwell on them. She's a good friend who lifts me up.
Last week I also had a conversation with a friend I'll call J. She had just gotten back from a vacation (which she was treated to by her mother who she is always complaining about.) She called and launched into a tirade of how she had played tennis and fallen and her injuries were inconvenient. (These were minor injuries.) She went on and on. I was silent for a long time and then she said "And how are you?" I paused a few minutes before telling her that it has been five years since I have had a vacation. I told her that she really needed to stop dwelling on the minor stuff and focusing on the big stuff. This friend has been calling and when we hang up I am emotionally drained after listening to her. She is dragging me down, not lifting me up.
I have made up my mind that at this time in my life I can't allow people to do that to me. I am fighting a rare and fatal illness that some people manage to battle for twenty years. Others don't do well. I can't help but wonder how the mind contributes to this. We only have so much emotional energy. When it is used up in a negative manner, it's gone. There's none left for the positive thoughts or the strength on a bad day to get through it knowing another good day is on the horizon. Life is all about choices. In the past I was willing to make choices that were not good for me in order to be the friend some people needed. I am not responsible for the needs of my friends, nor are they responsible for mine. I do however require that they are considerate of me enough not to use me to dump on. I don't deserve it and I won't accept it.

Sunday, January 22, 2012

Oh Mama

I have been so busy shopping for and planning my mother's birthday celebration. Weather permitting, all five of her children and her only sister will be there. I am excited. I am making a large tray of baked ziti that morning and doing a huge salad, picking up helium balloons and setting up a buffet at her home. (My house is too little to accomodate 14 adults and a few little guys.) I have her gift basket too. She loves this author whose books are no longer printed and we did a search on Amazon. Com and I found her four that she wanted. They are in a big basket with some great snacks, candy and a wonderful new tall mug for her Keurig. It's hard to believe she can be turning 80. When my father died, I realized that one day my mother would be gone too. For those of you who have lost one parent, I know you understand. She has slipped in her mind more than in her body, but she is aging. Yesterday she took two doses of all her meds. She was really concerned. Dad's hospice aide, Tom came over and assured she would be okay. I went and spent the day there and we ordered dinner so when we left she had stew I had made, a large chef salad and chicken parm in her fridge for the next day or so. We also made a huge fire in her woodstove. Will probably go over later this afternoon and make sure another fire is going. I can't carry or lift the wood but she can and I do the rest.
My ulcer is really painful these days. I am taking Prilosec and am restricted with the PH med as to what I can take. Everything I put in my mouth gives me heartburn.

There is a lot going on in my family right now. Since my Dad died the family dynamics have been topsy turvy. I don't want to get into it, but it's difficult. One of my siblings came to my house feeling "out of the loop" and I tried to expalin that we are ALL feeling that way. I went on to say that with all my health issues, the family dramas are NOT my top priority right now.
Well, this is short but I need a long, hot shower. Not feeling so great today. It's noon and I am still not showered or dressed.

Thursday, January 12, 2012

Turning The Page

One of my New Years resolutions was to read more. There was a time when I read two books a week. I have had dry eyes and it makes it difficult to read. I have also switched to progressive lenses which I don't see as well with to read.
My reading glasses are an old prescription. I need to go to the eye doctor and get them checked again and maybe get another set of lenses for them. My DH had read The Girl with the Dragon Tattoo and the sequels and really liked them. I just finished the first one and have started on the second one (yes in ONE week. woohoo). They are so well written and I am a bit envious of my friend, Monica who read them in their original Swedish. I met her when I was 19 and she seemed so sophisticated, having left her Sweeden and lived as a governess in England before meeting a US soldier there and coming back with him. She took me under her wing in many ways while we worked at McGraw-Hill. After my son was born I quit. There was no child care back then and I lived in a rural area. Noone I knew was babysitting and for the next twelve years I was a stay at home Mom. After that I went to college part time until my son became ill at 16 and the next three years were spent taking him for medical treatments when he wasn't hospitalized. When he was, I slept in a recliner in his room. When he got better I went back to work and worked up until last year about this time when I left sick. Although I planned to return about this time, the company let me go and I discovered that I am no longer able to work. It's such a huge adjustment. I miss my coworkers. I miss the socializing. I miss my paychecks. I even miss my cafeteria with our own little Starbucks in it. It's like my entire life has changed so much. There was a time when I had so many friends. It seems over the years they have moved away or their lives went in a different direction. I feel alone much of the time. One of my friends was going to come visit today but ended up in an emergency room with her elderly aunt. If only there really were a time machine and we could go back. If only I could feel what it was like to be 19 again, healthy and strong. I don't remember what it was like not to be short of breath. I've been this way for years now. My neighbor came over yesterday to check on me and we went for a walk. She couldn't believe how much trouble I had going up a small incline. I have oxygen but it's so heavy to carry. We had thought we would go a mile. I had to stop after half a mile. At least I made it that far. It was good to spend time with a friend.

Tuesday, January 10, 2012

A Big Surprise

Today I saw the mailcarrier walk up to my door with what looked like a delivery from Omaha steaks. Just as my chops were watering I saw that it said "FRAGILE" all over it and knew it had to be something else. A girl I have known since I was 9 years old sent me a big package filled with gifts. Her birthday is Nov. 26th, often Thanksgiving Day and some bad things happened all that day. She chose not to celebrate. I knew that noone, including her husband, would acknowledge it and I sent her a package that arrived the day before with a birthday and Christmas gift. It turns out it made her birthday happy again and she said it was her best Christmas ever. When she called me, I told her Rob and I had been gifted money by our Moms and aunts but it had been used for Rob's car repair other than a purse for me and paints for Rob and a few other things he wanted. Under my tree I had a few things from him and a small box of candy from my neighbor across the street. It was a lean year. This friend snapped into action to fill the box with things that I would really like. She even threw in a few things for Rob. She gave me a beautiful satin nightgown with the matching robe, bath gel, lotion and perfume in a Jasmine scent (really pretty), a Thomas Kinkaid winter house that lights up, a winter jacket, earmuffs, mittens and a beautiful plate with a stand that says "Flowers Feed the Soul". It felt more like Christmas today than the actual day and it was so exciting. I'm not a materialistic person and she went overboard but the thought in what she did, and the time it took her to shop and wrap and package it all, was what I truly appreciate. She is not well herself and works part time.

I have been waiting home all day for the delivery of my medicine. It is sent UPS and I have to be here to get it since it's so expensive. Yesterday I was up early to go see my cardiologist and that became a bit stressful which I will talk about in the PH blog. Right now, I feel very special and very cared for. It just doesn't get any better than that. :) Thank you Dee. ( Pictured at top. )

Friday, January 06, 2012

Zippity Do Da .....

I was awakened about 5 a.m. by ear pain. It felt like pressure but when I got up and began moving about it went away. I have already done two loads of laundry, had breakfast and washed all the pet bowls. I even tended to my virtual farm on Farmville which has been neglected. When I get done blogging I have to go continue with laundry folding.

I have been so busy getting my mother's 80th birthday planned. There is so much confusion when you have five children, each with their own ideas and opinions. I wanted to do something in her home so that all her family, including grandchildren could be with her. It looks like it will be everyone there at this point, including her sister from Maryland. Great photo opportunity. My brother is furnishing many pizzas and I am going to have a large tray of something (ideas running through my mind are a chicken or pasta dish) and a salad. Of course there will be an enormous cake and other things people decide to bring. When you do this in a restaurant they rush you out and noone wants to come back to the house for the cake. Been there, tried that. Also, I am so limited with my sodium in my diet there are few places I can eat at. Most of my family love the Olive Garden. There is nothing there I can eat. I refuse to go and watch others eat or pay for a meal that I can't have. It's not fun giving up salt. I will not be able to have pizza but they all love it. Thinking I might have a crock pot of dirty dogs too.

I had a rather unpleasant experience at Costco this week. I went to buy something at their food court and it was going to cost $2.76. I took out two singles and found I didn't have the change so as I handed the young woman behind the counter my money I said "Oh, this is making me break my twenty." She was ignoring me and looking all over the place. She handed me some bills and over that was a paper plate. I put the plate down to put the money in my wallet when I realized she had given me change for a five. I told her immediately and she said "You gave me a five. " I responded "In my wallet were three bills: a twenty and two singles. Had you been listening you would have heard me say that I would have to break my twenty as I didn't have the coins to make 76 cents." The guy in the back asks her what's wrong and she says rather loudly "She says she gave me a twenty but she didn't. She gave me a five." Now people in the line are staring at me like I've done something wrong. I ask her to call over a manager. She does and as the manager approaches she calls out "What is wrong?" and the story gets loudly repeated. A part of me wanted to walk away but I refused to be ripped off by this person who has no manners or concept of how to treat a customer. I ask the manager to pull the drawer and count the money and give me back my $15. She tells me that it will take well over an hour and it would be easier if I would wait until the following morning after they count the drawer she will call me and then I can come pick it up. I explain that a. I am not the one at fault b. she needs to instruct the woman to stop saying that I gave her a five when I didn't even have one in my wallet and c. that perhaps this was not an accident but deliberate and that I have heard some cashiers do this and later remove the extra money. I prefer not to be inconvenienced to return.
The manager is very nice and clearly running around like a chicken without a head. I don't want to be unreasonable to I tell her to call me in the morning and I will return. On my way out I go to the customer service desk and ask if I might speak to the store manager. I'm not really comfortable leaving without my money and don't get why pulling the drawer would take that long. She calls up the same person I have already spoken with who repeats it all again. I tell her to call me in the morning and I will return. It's not that far.
The following morning I took the dog to the vet and got home and when I still hadn't received the phone call as promised at 11:30 I call the store. I am then told the person who looks at the sales and drawer amounts has not come in to work and was supposed to be there at eleven o'clock so now I am really annoyed. She tells me she can't give me a refund without approval of the store manager. She will call me back. She calls back and says he's not available for her to speak with. She will give me a gift card with the amount on it. I tell her I am going to call their corporate headquarters. I call them and they agree I was not treated well. He will call the store and speak with them. He said they should have pulled the drawer. He says to go there and speak with the store manager. I return and once again am told he is not available. The food manager tells me she will cash the card for me so I can leave with the cash. Folks, I am not happy. I was seriously inconvenienced and I never did receive the call back yesterday afternoon the customer service supervisor promised me. My neighbor who works at Wegman's told me my treatment there would have been much different. They wouldn't tell me if the drawer was over or not and I feel that they are hiding something. I will not be doing the majority of my shopping in Costco. I will do my shopping where I receive good customer service.

Monday, January 02, 2012

One Bad Night

I don't know what is going on but it seems I have a real indigestion/stomach issue. If I drink coffee I pay dearly but now even food is doing it to me. I have what taste like sulfur belches and went to search that on the internet. It says that can be an indication of a duodenal ulcer. I am on another medication that can cause ulcers also.
Last night I had a salad with chicken breast in it for dinner. The pain/discomfort began around 9 o'clock and I couldn't sleep. When I tried to lay down the acid was coming up my throat and I was getting nauseous. Finally, I was so desperate that I called the drug company's nurse and asked her. She told me to try Tums and it worked. Mind you, I would have tried that on my own but you have to clear anything you take over the counter with them. The drug can interact with herbs and OTC meds and you can have serious problems. I finally conked out about three a.m. and slept until noon. My dear husband was off today but got up at 7 a.m. to care for the pets so I could sleep in. I feel so badly at how much this illness impacts his life. I have been on this medication for three weeks now. I have never had so many side effects from any drug I have ever taken as this one. I have no choice. I am battling to get the pressure in my lungs/heart under control. People can't see those organs or the nausea and want to tell you look great. I appreciate that but they should only know. Somedays I am just tired and miserable from the side effects. I hope and pray it will get better soon. I think it will.
Happy New Year!