Tuesday, December 04, 2012

Fa La La La La

Tis the season of giving. In New Jersey there are so many in need this  year. I wasn't sure where to help out. After talking with others and actually going and taking some toys to two different groups, I found the place I could tell were the most interested in helping the kids and would put what I donated to the best use. I am so excited to be helping them. It's actually a dental office with three female dentists who are lovely people. Their receptionist, Barbara, is indescribable. She is a woman of boundless energy who is so highly motivated to help others and dispenses such caring and appreciation to those who are working towards that goal.

Last week my holiday spirit was in short supply. I saw something about this group on my town's facebook page and contacted them. I had two large bags I had put together. It was a dreary and rainy day and I just wanted to get the things out of here. When I met Barbara my mood lightened. She exuded holiday spirit and gave me a warm hug. By the time I left there I was feeling oh so much better. She gave me a tip of where I could buy a lot of toys inexpensively and I went to that store. I had another group in mind that were collecting at a real estate office in another town but had a drop off in my area. After buying another large bag of games and mainly Transformers I went to the other place. What a difference: disorganization central. There was no enthusiasm on the part of the person there and the toys were left where someone could grab some and run. Not that many people would do that in a medical office but hey you never know. I made up my mind I would stick with the other group (Galleria Dental of Manalapan, NJ.) Today I dropped off another bag to them. To be honest this year we shouldn't be buying many gifts. We should have cut way back. I have a pile of medical bills that need to be paid but I remember being a child and having nothing to open at Christmas. It was one of the last years my Dad was in the Navy. We had four kids and two foster kids. They were unofficial and my parents got no money for them but we knew their mother who was in a mental hospital and their father was an alcoholic. Each of those kids got a nice gift. My gift was a child's table that I shared with my little sister. Great gift for her but I was 9 and barely fit in the chair. Later that day I took a walk to my cousin's house and she had gotten one of those metal kitchens with a sink that water ran in. I was so jealous. I couldn't bear the thought of these children who lost their homes not having gifts to open. I am psyched. Since then I have put up a few decorations and I have cookie dough chilling. Rob is working six days a week right now so we have no tree as of yet. Oh...and speaking of Rob.....he got an early Christmas present. His brother bought himself a new PS3 and sent Rob his old one. He even paid to have it cleaned before he sent it. He also sent him two games. Rob was thrilled and I was thrilled for him!

It's so hard when you lose a loved one not to get down around the holidays. My Dad was always with me for Christmas. There was never a Christmas I didn't spend with him. This will be the second. In his memory, I am having the stones of his grandmother and great grandmother repaired. It's expensive but well worth it to me. I know he would want me to go on and to enjoy myself. I'm going to do that. My husband and son deserve a Merry Christmas and I plan to serve that up on a gigantic platter with a side of love. Life is so short. I have learned that it is in giving that we truly receive.

Friday, November 16, 2012

Regrouping

The past few weeks have been like a bad dream. This is the same feeling I had after 9/11. The feeling that such bad things don't happen in my little corner of the world. Healthwise they have but nothing else that compares with that time or this. I feel a bit in shock. I rarely watch the news as it makes me feel sad and helpless. I have a cousin (my ex's cousin who decided to stay with me post divorce) who is stuck on Long Island. What a disaster they have been living in. No power until yesterday when they learned they only have it in a portion of their home. The bottom floor was destroyed along with all their possession that were on that floor. They were in a hotel, were kicked out (told the room had been reserved prior) and this Sunday will be staying in another hotel while the sheet rock in their home that is full of mold now gets replaced. She has a 9 year old son. They are still using a generator they were able to get about ten days ago. They sat in the dark and protected their home from looters. When they get it fixed they are thinking of going to California, where her husband was from and where she lived about ten years ago.

My mother has a couple staying with her, in the apartment attached to her house. He is the assistant minister at her church and someone who has been a faithful visitor to me while in the hospital despite the fact that I don't go to their church. He is married to a woman who was originally from Canada and a nurse. They are both about 70 years old. He purchased a laptop and we went over tonight to help him get it set up for my mother's wi fi. At his age he wasn't happy that he could only get a Windows 8 pc but he took it and Rob tried to help him navigate through it. Rob also helped him set up a printer. I was busy watching his wife painstakingly removed soaked pictures from an album. It was a lovely album she had made of her childhood. Most of the old photographs (such as her grandparents wedding photo) were one of a kind. She was placing them between paper towels to dry. With each photo she had written her memories or family stories. I was so touched reading them, especially the one where she was 8 and her father, a farmer, was killed in a tractor incident. Her story that accompanied it told of how her mother, now a widow with four children had to make do on $13 a week. She had just started piano lessons and her mother told her that she could continue with them. Only as an adult did she learn they were 50 cents each and realize what a sacrifice her mother had made. (Incidentally she plays the piano in her church and plays beautifully.) I could see the love in her face as she spoke of her mother and so gently handled the soggy photographs. This was difficult to see.

When you go into the grocery stores the shelves are once again stocked. I picked up  a free turkey today (I had spent $300 on groceries in November to qualify.) I'm not sure I'm up to preparing a turkey dinner. I know Rob who worked all last weekend and will work this Saturday is not. It's not that I'm not grateful. I am overwhelmed with gratitude that our home was not damaged (except for one window sill which became water logged and must be replaced.) I am grateful that we were able, with the help of a high school friend to locate a generator and that my son had cash on hand to lend us to get it. ATMS were not working and all things required cash. I just feel broken hearted for all these people who lost so much. It will be years before their lives return to normal. In the case of the people I have written about while FEMA has been there their homeowners insurance has not and nothing can be done until they come and make decisions. FEMA gave them rent money. My mother told them to put it towards things they need right now. They are looking for a more permanent rental as my mother has all her stuff in that apartment. They want their own place and in fact, there is some doubt whether or not their house can be salvaged at this point. How do you start over in your seventies? They used to have their grandchildren one weekend a month. They can't do that at my mother's as there just isn't room in the apartment. I wish I had answers. I wish I could give them a big fat check to help them. I can only listen and sympathize. It seems like so little.

Saturday, November 10, 2012

Things Returning to Semi Normal.....Slowly

We have traffic lights again....YEA!!!!! There were a few diners and pizza places open.The grocery stores have power but the shelves in the freezer aisles are empty and elsewhere have little. I think people went out and stocked up before the hurricane and immediately afterwards, not realizing that they would lose power a second time. I have a few items in my freezer but not a lot. Our Shop Rite had few meats and Target had none. You have to wonder if all the stuff that should have been thrown out was.

My doctors offices finally have power and phones back. There are sections where people gain then lose power again. The power company says it's because they have to close down some places before bringing others on. Last night I talked to a cousin whose daughter is on Long Island with no power, no cell etc. The first floor of her house is flooded. They got the water out and had to throw out all their belongings on that floor but are staying in one room upstairs. Yesterday they finally got a generator. I think now many people who never considered getting one will be out buying one. I feel so fortunate to have one now. Ours is not a large one but will do for our smaller home.

I have noticed that fewer people seem to be blogging these days. Fewer people are commenting. I guess lives are just very busy. I miss comments though. Hope you are warm and safe wherever you are. I think in another week or so we will be back to routines in my town. The shore areas are another story.

Monday, November 05, 2012

Hurricane Sandy

Last week we knew a hurricane was coming up the east coast. We have been warned in the past about such things but never really had a problem before. Hurricane Sandy was a whole different story. It began with just rain and some high, strong winds. As the night progressed, we quickly lost our power (about 4 p.m. Monday.) Tuesday we still had wind and rain but towards the end of the day it was more of a steady drizzle yet still windy. My development looked so odd with no lights at all. It was pitch black without the street lights. Tuesday evening found two neighbors with generators and you could hear them running. It was about the only noise. On Monday we heard many explosions of power grids and saw blue flashes of lightning. I knew then it would be a few days before we would have power again.

I was very fortunate to have a wonderful neighobor who happens to be a police officer. He managed to call in some favors from his friends and one waited with a neighbor so he could obtain a generator. Another got him the gas and yet another delivered the item to his home where a few more helped him get it all set up. Once it was running, they came over and offered us a line we could use to power either a refrigerator or freezer. I alternated it back and forth but if this ever happens again, I will just put the important items in the freezer of the refrigerator and throw out the rest. On the second night, we got the idea to find a clock radio and plug that in. We also had my cpap machine plugged in and I slept on the sofa in the living room to get some real sleep after a sleepless night on Monday. By Thursday we were listening to the car radio once in awhile and realized the utter devastation to our state. We made our way out to the local grocery store which was being powered by generators. There were guards everywhere and they had lines for buying coffee, lines to pick up ice (limit two bags per family), and very long lines at the registers. For the first few days the gas stations and grocery stores would only accept cash. If you didn't already have cash you had a real problem because the banks were all closed. NO ATMS. No power anywhere. No traffic lights, no house phones and  the cell phones were useless. We were able to get on Facebook a few times between 4 and 6 a.m. but never completed a phone call until later in the week...much later. Even then, it connected but the call dropped. Rob had a phone number to call and we had to go find someone with a working cell (Verizon seemed to be the only ones working) to call in and check each day to see if he needed to go into work or not.

Friday we knew that there would be a concert on NBC tv. Some of my favorites (Springsteen and Bon Jovi) were going to be on. We hated to miss that. The irony: they give a telethon to help but you can't see it. We sat outside in Rob's car with the heat running and listened to it. I just cried and cried hearing and learning more about the devastation that we had no way of seeing. When we had gone out I was overwhelmed by the uprooted huge trees, the lack of any traffic lights and the fact that no gas stations were open. Friday night we were so cold we could barely sleep, with several quilts on the bed. When we woke up Saturday I told Rob we needed to find somewhere warm to sleep that night. He called local hotels. No openings anywhere. Towards the afternoon my neighbor suggested we plug our line from his generator to the FIOS box and wa la we had phone service (not a cordless that was uncharged but an old fashioned phone.) I called my mother on her cell and she said that her power had come on 15 minutes ago. We high tailed it over there. We learned the tiny town near us had power and took a chance and called the pizza parlor. YES! They were open and we had pizza for dinner. That was so much easier than unplugging the fridge, moving out our stove to plug it in and heat up some frozen chicken strips from the garage! After we had the pizza my neighbor called my cell to let me know our power was back! YIPEE!!! We had brought over one load of laundry to my Mom's and we got that out of her dryer and headed back. There's no place like home...there's no place like home.....unless you have no power. Rob sprinted around the house putting things back in order.

I can never say enough how much we appreciate our next door neighbors Jonathan and Carmen. They were so very concerned about me having what I needed medically, offering to do so much and generously sharing their generator. My son brought over ten gallons of gas for us to contribute but we offered to pay for more and they wouldn't even accept it. I plan to get them a nice gift certificate to their favorite restaurant. Well, once I get  my disability check which is now a week late! We had no mail Monday, Tuesday, Wednesday or Thursday. So I guess sleet etc is okay but not darkness. I need that check. I had to throw out food from my refrigerator and freezer because it was over 24 hours before we had electricity from the generator.

On Friday I had a cardiology appointment and I drove to their office. It was vacant. I have to get in touch with them first thing this morning. I am overdue for very important blood work. In fact, if they are not open I will have to try my pcp and then if that fails, an ER visit. I hope not.

There are many stories such as our brush with fire that will come in the near future. For now, I am enjoying the hum of my furnace and preparing to make hot oatmeal. The joys of the simple things. There are many people still without power as I type this. Yesterday we dropped off supplies to a shelter for seniors. They were running out of stuff. My beloved shore is a mess. The boardwalks are gone. The rides are in the ocean. I haven't felt this kind of devastation since 9 11. My heart breaks for those who lost their homes. Some are just underwater like my friend Richard's. He has a full basement of water and three feet on his first floor. He is retired and his wife works one day a week. They don't know how they will be able to replace. They are staying in the apartment of my mother's house for now. They had flood insurance (over a thousand dolllars a year) but it didn't cover their furnishings. That would have been $800 more which they couldn't afford. They consider themselves lucky because they still have their house. Their neighbor's house was pretty much underwater I think.

Take a moment and appreciate what you have. Just a warm cup of coffee in your warm home is a lot to be grateful for. It will be months before many people here can go home and some never will again. Pray for them, or at least think of them. I never thought this could happen here. You never know.

Friday, October 19, 2012

Another Philly Visit

Thursday we made another visit to the PH specialist in Philly. We had to leave here by 6 a.m. in order to get there for 8 a.m. Nothing like doing a 6 minute walk first thing in the morning and before coffee. I did okay though except for some huffing and puffing. The doctor was not happy as I had gained 9 pounds which within a few minutes he could tell was fluid retention. This is not good. I have to admit that lately I got lazy, less diligent about my salt intake. Lesson learned. He also wants me to drop another ten pounds over the next three months and start some moderate excercise. I see my regular cardiologist on Monday and will discuss with him. It's always a balancing act keeping all the advice in my head because it isn't always the same. He feels the heart attack caused an insignificant amount of muscle damage but the other cardiologist saw the actual test and felt it caused some. More discussion with him on Monday.

It is a cold, rainy day here today. I am so glad we had nice weather yesterday. We were both so tired and I kind of wanted to do something else while in Philly but we had to have an unexpected echo done and that took a few hours. After that we had a quick lunch and Rob just wanted to get home. When we got home he took a two hour nap so I knew he was shot.

I have been busy working on the anecestry stuff. You think you have something all figured out and then you find something else that shakes it up. My  great grandmother is listed in a family book as having her father be James McGowin. Now I found her death certificate with his brother's name. I will probably have an entry all about her murder and the investigation I am doing, along with the help of some fine, very kind people who are in Alabama. They are going to go to the cemetery she is supposed to be at since she is not listed on that cemeteries find a grave record. I am so grateful for their help and information. I am still learning how all this works. It's time consuming and complicated. It's also very rewarding. Little would this woman ever guess that someday her great granddaughter would be pursueing all this and trying to make sure she was buried with at least a headstone. If not, she will have one as quickly as I can take care of it.
It's a matter of honor. Speaking of which........don't know if any of you have thought about this but when I was a kid I always remembered to thank people for things. I called or wrote thank you notes and I taught my son to do this as well. I have so many nieces and nephews that I give gifts to and never get any kind of acknowledgement from. Sometimes you even wonder if they got it. I have begun cutting back on these gifts as I feel I am encouraging their behavior sometimes. I actually had a nephew who called to remind me that he had a birthday the next week. I sent a card and money which were never acknowledged. Since I sent cash we tried several times to reach him. When we finally did we were told that he had received it but was busy and didn't feel like answering the phone when we called. Where are the manners people used to have?
I don't want to stop giving but I also don't want to contribute to people's feelings of entitlement. Where to draw the line.....it's a sticky issue.Any thoughts?

Monday, October 15, 2012

Ancestry OCD

I have spent more and more time on Ancestry.com lately. It's as though I am on a mission. I often plan to spend only an hour or so and then boom, I glance at the clock and three or more hours have passed. I have made great headway on my family tree. I was very fortunate that my aunt and cousin had done so much work on my mother's side and are still working on it. My father's side has been another story. I must caution you that if your parents are still alive you need to pump them for any information they can give you. I found every detail helpful. My grandmother always claimed to have Native American blood. She had high cheekbones and she really seemed to know this as a fact. I am spending countless hours trying to prove this now.
I have found her ancestor, James Monroe Poston Sr. who attended a naming ceremony for the Creek Indians (which are called the Eastern Cherokees.) Apparently, the Cherokee nation at that time was mainly in Tennessee. What compounds the problem of identifying WHICH James Monroe Poston he is, or WHICH John Poston his father was, is that at that time there were no social security numbers. There are fathers with brothers who all name their children the same name, who are all born about the same time. There is controversy among families over which ancestor is THEIR ancestor and which is not. I wish I had the money to hire an expert some days.

I have been struggling with my PH medicine and the side effects from it. Once again my stomach is upset constantly. I have tried removing nearly every thing from my diet at one time or another and it seems to make no difference. Each night I find it difficult to sleep with acid reflux a constant problem. I also suffer from insomnia. Three nights ago I slept three hours out of twenty-four. I can't use my breathing machine when that happens and the following day I feel horrible. It takes me a few days to get over such a bad night. I keep hoping that after time my stomach will calm down but I have been on this medicine several months already.

On Thursday I will be going to Philadelphia to see my PH specialist. We need to discuss what the heart attack means as far as he's concerned and whether or not the NJ cardiologist should put me on a beta blocker, something normally done after a heart attack. I have dreaded yet another medicine. The blood thinners and PH medicine, thyroid and diuretics, along with potassium are enough. Trying to remember to make medicine about 8 times a day is frustrating for someone who is tired and oxygen deprived. I do a pretty good job with using two pill cases for days of the week. I rarely miss any doses.

I got to a craft show Friday night. I didn't really buy crafts but there were people selling silver jewelery and I got a necklace I had wanted. It's a Tiffany's knock off at a fraction of the price. I have been trying to buy Christmas gifts to put away a few at a time. Unless something changes this will be the last year we will be able to buy Christmas gifts for our extended families. After July I will have another loss of income which will be significant. At that time I will be transitioned over to Medicare as well. I had purchased some gift cards and cannot find them, still hoping they will turn up. They weren't large ones thank goodness.

Today is the third anniversary of my grandmother's passing. I miss her so much. It is also the birthday of a cousin who has been a part of my life since I was four months old. She is a wonderful person who is going through a difficult time now with her husband's health.
Hoping I can finally fall asleep. I have to be at the periodontist tomorrow for a deep cleaning.

Wednesday, October 03, 2012

Visiting with a Friend

Yesterday I got to visit with my friend, Barbara. We met in our senior year of high school. When we met we were both going through a rough time. I had gotten married over the summer of my junior year and when I returned to my former high school they informed me that I could no longer attend that school since I moved out of my parents house. I had to go to the high school that was in the town of my apartment. The other students were overly friendly as they had formed their friendships. Barbara was friendly to me and I soon learned that her Mom was dying of cancer. She had lost her Dad at 12 and was living with her grandfather. She had a sister two years older than her. Life was difficult for two teenaged girls living with a cranky grandfather. Barbara quickly became engaged to her boyfriend Steve and she needed someone to help her plan her wedding. That was me. We went dress shopping and it was so awkward when the woman asked her if her mother would be joining us. She gestured to me and said "She's my subsitute mother." I was her matron of honor and I even taught her how to drive. (This is an ongoing joke.)

(This is the GetzenDanner family crest (my great grandmother's family from Switzerland originally who married a German and moved To Germany)

She had research her ancestry and has a beautiful book with pictures and documents of her parents and grandparents lives. It was great to see the photos of her Mom and see the strong resemeblence. We chatted about our kids (her daughter is a year younger than my son) and the days when they played on the floor while we visited. So many things have changed in our lives but the bond of friendship, built on a lifetime of memories, remains strong. I feel like my soul was nourished. As I left she stood on her porch and said "You know where I am." Yes, my friend, I know where you are and you always welcome me in the warmest way and make me feel cared for. Thank you. I need that, I really, really, needed that.

Monday, October 01, 2012

Hanging Around

The past two weeks I have been home a lot. Not so much by choice as necessity. I have been plagued with a problem that is embarassing to talk about. Remember that commercial where the woman pronounces diarrhea and it sounds like she is referring to a plague? For two weeks I have tried to adjust my diet, eaten mostly bananas, rice, toast, weak tea, ginger ale but nothing helps.
At this point, after Saturday night where I was up three times to go to the bathroom I have decided to see my primary care doctor. I have already spoken to the PH specialist in Philly who tells me it is not that medicine causing the problem. It seems a funny coincidence that my coumadin levels (blood thinner) have been higher than normal at about the same time this started but I have been told that is mere coincidence. I shall see what my internist says. She is very intelligent and insightful. I was lucky to get in to see her this afternoon since I just called this morning. She had a premature baby a few months back and has cut her office time down to three days a week.

Rob worked overtime Saturday morning but when he got home we had a quick lunch and went out for a few hours. There was a craft show just 20 minutes away and I haven't been to one in quite a while. We found a great sign that we both liked for Halloween for just $15.00. I will try to get a picture of it later. I also picked up some nice potpourris and metal dishes for them. There was a band playing with a good singer so we sat outside for awhile and just relaxed, sharing a funnel cake. We both needed to spend time away from our pets and phone. I love my pets dearly but they are quite demanding at times. They are very spoiled and being in the kitchen is a nightmare as I am dodging them at every turn while trying to cook anymore. We have actually at times put a gate up so they couldn't come into the room after I was tripped while making a quick turn. I fell on my chest and ended up with a hematoma in it that was painful. Duffy is a working dog (Shetland sheepdog) and he used to get a lot of excercise. He only weighs about twenty-five pounds but he pulls so hard on the leash at times that I can't walk him anymore. He needs to be excercised.  We fenced in part of our yard for him and he has plenty of room to run around in but he just lays on the patio near the sliding door instead. I feel guilty and I actually offered to pay two neighbors to walk him a few times a week but they declined. He is nearly seven and only wants to play at bedtime. The cat is another story. He leaps through the air and runs and lands and is all about getting from here to there in five seconds. He is nearly 11.

Well, I need to start getting ready for the doctor. I have laundry to fold before I leave. This week I am going to see an old friend tomorrow and then on Friday I go for blood work and then later to the therapist so it seems I will have a busy week as it continues to fill up. I'm glad because Rob will be working at least an hour late each night this week. When he's not here I miss him. He keeps my mind on the good stuff and when I'm alone I sometimes begin to think about the what ifs. Now that the weather is cooler I am going to try to have better meals because I can put the oven on. Yesterday I baked a chicken and it was great to have that smell moving through the house. I want to pick up a brisket today and on Tuesday I will use the leftover chicken to make chicken divan. Just one more reason why I love Autumn.

Thursday, September 20, 2012

Keeping Busy

I began going to a therapist a few weeks ago. She thinks that I have been thinking too much. She suggested I get out more and see people and do things that otherwise occupy my mind.

I came home and thought how much my aunt and cousin have enjoying researching for the family tree on Ancestry.com and I set up an account. I have spent countless hours on it and find it a great distraction and at times it's exciting. Other times it can be frustrating but such is life.

I also realized that I need to let go of the feeling of missing work so much. I didn't choose not to ever work again. It's the hand I was dealt and I must deal with it. Acceptance and finding the silver lining in the cloud has been my goal the past two weeks. My mother has been much better and when my sister visited my sister took us out for lunch.

Autumn, my VERY favorite season is here. I already have a bowl of freshly harvested apples on my table. My Halloween decorations are about and there is quite a chill in the air today. I really want a carmel covered apple. I was thinking of the fun of Halloween as a kid. It was the best! Not so much the candy but the dressing up and the parties had by friends. I miss the friends that I once had. It's hard to maintain friendships when people live far away and when your illness takes so much of your time and energy.

Well, my oxygen was just delivered and I must get over and walk my mother's Boston terrier. My mother fell and twisted her knee which is now in a brace. Her yard slopes and she can't manage going up and down it. Her little dog is very strong and it's hard for me. I really wish she would get rid of her big house and go to something with no stairs in an adult community. In fact, that is looking good to me already.
Enjoy the Autumn.

Wednesday, September 12, 2012

A Lovely Day

Today I had a wonderful day. I needed one...badly.
The past few days have consisted of me dealing with the cardiologist in New Jersey who has  been in touch with my doctors in Philly. He returned on Monday and he called me Monday night at 10:30. He said that the report said I had a heart attack and he actually wanted to find out that it was wrong. He reviewed everything from my stress test and concluded that I had, in fact, had one. There is damage and since it is in the right side near where I had the bypass he felt that the bypass had closed off. The doctor in Philly who did the actual cardiac catherization on me told him that had that happened it would have been a very bad heart attack. I asked him how bad it was and he said that overall the stress test was bad but not horrible. I was relieved that the glass was half full. Now they will be rethinking about letting me go off of the blood thinner and when I do I may need to be hospitalized for about ten days getting IV heparin instead of being allowed to give myself the belly shots. You cannot have heparin at home because they draw blood like every six hours. Not sure how this will work out in the future as I have to go off it to have my lungs tapped and for other procedures.

Now for today. Today I got to meet my brother and sister-in-law's new puppy, Olivia. She is part terrier and a real cutie. I love puppies. I took her a great little toy that squeaks and realized it's about her size right now! My mother then took both of us out to a lovely Italian restaurant for lunch. I had penne vodka and a wonderful salad. The weather was great, we enjoyed our meal and playing with Olivia. I had forgotten just how sharp puppy teeth are! My sister-in-law, Leslie, is such a wonderful person. Every time we spend time together I come home feeling so happy. She was in a bad car accident a few years ago which required her to have a knee replacement. She had numerous problems with it and walks with a cane. Being on her leg for any amount of time causes her pain. This year she had to take an early retirement. She no longer drives as a result of all this. She is still always cheerful and thoughtful of others. She has helped me to understand a lot of my feelings.

Well, it's late. I just got done doing laundry. Rob is already fast asleep as are the pets.
It's been a long but wonderful day.

Saturday, September 08, 2012

Nuclear Stress Test

On Thursday I went and had my nuclear stress test. To be honest, it wasn't as bad as expected (with the exception of needing an IV.) What takes up to four hours was over in two because my NJ cardiology office is run like so well. They had it so cold in there that I was freezing and they even accommodated me with blankets while having something like a CT scan done and for the actual test. I wasn't allowed to actually walk on the tread mill but they used a chemical which in six minutes did the same thing. My doctor has a nurse practitioner in his office, Christine, who walked me through it and was very calming. When you've had as many medical tests as I have it's very easy to read people. Christine did a good job of looking calm, cool and collected but I glanced at the machine and saw some things which I thought were troublesome. At the end she wanted me to rest and recover a few minutes, then I was told to eat something, repeat of the scan pictures and then another EKG. I knew that was not normal, the last EKG. I noticed my doctor was not present in the office that day and was told that he was at a symposium. I would hear the results when he had a chance to review the test and call me.

This morning I got up and went for my second visit to my therapist. I really like her and find her to have great insights. We had a great session and then I had to go to two banks, pick up a baby gift at Macy's and then came home. Macy's had a phenomenal sale by the way. I got home and shortly afterwards my primary care physician called. "Nelle, I saw the results of your stress test. You've had a heart attack and there is a lot of ischemia. What is the cardiologist saying?" I told her that I had not spoken to him. I have gone to this primary care physician for about four years now. With all that has transpired, this is the first time I felt she was upset. She then explained that she felt the news should be given to me by the cardiologist who could explain what this means in detail. Obviously, the ischemia shows there was damage to the heart because that basically means there is little or no blood flow to an area.

I am sure I know when this happened. August 5 when all the drama was going on with my mother I had an abrupt and intense chest pain that lasted about five minutes. It was over quickly and I knew I was seeing the cardiologist the next day. I talked to him about it and he said that the EKG showed changes, lack of blood flow to a certain part of my heart so he wanted the nuclear stress test to see what had happened, if anything.
Lesson learned: Do not allow others to upset you.

I am trying to remain calm, not get upset. I fear that this is a sign that my heart is weakening overall. I fear having a heart attack while home alone. I fear surviving a massive heart attack. I woke up at 3:30 A.M. this morning. Couldn't go back to sleep so just got up. I keep telling myself not to panic. I will feel so much better once I hear from my cardiologist. I also had my primary fax the report to my Philly PH specialist, who is also a cardiologist. I want his take on it. I see him next month.

As the British say: keep calm and carry on. Easier said than done.

Monday, September 03, 2012

Taking in a Stray

Last week one day a bag appeared with this little fella and a post it note attached: "I am looking to be adopted. Will you please take me in and give me a good home?" Well how could I say no? I wanted to name him Corny since he has candy corn buttons and similar body. His name tag just says "CAT" but Rob wanted him to be Otis so he is Otis D. Cat. Isn't he charming? I love folk art primitives and so does my sister-in-law who sent him my way. She has one just like him and a smaller one too. I had admired hers so much last year that we she went back to Lancaster she got me my own.

We have a lot of Halloween decorations but first I want to bring out the Fall items. It's raining here today so it would be a good day for it. We have taken a really laid back weekend here. Went out to dinner for our anniversary. I wasn't feeling great that day but we had a nice dinner and Rob surprised me with a bouquet of gerbera daisies and I gave him a pen handmade by my cousin's husband. It's really beautiful in dark blue and turquoise. He makes hand tooled pipes and pens. The pipes look like Native American peace pipes to me.

Well, Rob is finally awake. I let him sleep in this morning as he has gotten up early every other morning. It's been a nice 3 1/2 day weekend for him. We have caught up on reading. I have finished the last book of The Hunger Games series. I started a new Jodi Piccoult book.

This Thursday I have my nuclear stress test scheduled. I am not looking forward to it at all. The Philly PH doctor agreed that it should be done. Perhaps they will find out something new and helpful.
Happy Labor Day.


Thursday, August 30, 2012

Fall is Coming!

I am so excited about Fall coming. The crisp morning air tells me it is almost here. MY season. I already have plans to go to Amish country (Lancaster) with my sister-in-law sometime soon. The local apple orchards will be opening with their fresh pressed cider and the new crisp apples will soon be ready for picking. Ironic because my first tomato just ripened. I still have about twenty more on the vine that I will probably pick and let ripen indoors.

 Today I will be meeting a new therapist. I am hoping I will really like her and find her helpful. There is just so much going on in my family of origin and I would like an outsider's take on it all. Rob is very supportive and so are two of my brothers and an aunt and a cousin but other than that it's been difficult. I  have many neighbors who I talk with. Right now with the economy being so bad the three I talk with the most are struggling badly and one will be losing her home soon. I don't want to weigh them down with my issues.

Tomorrow is our tenth anniversary. It seems like just yesterday that we were getting married. I was so full of hope about our future. It was just two years later I was having my first open heart surgery, followed six months later by a breast cancer which took two more surgeries. Since then it seems that I have been struggling with one health issue or another. On the upside, I am still here. I plan to stay as long as I can, providing I can have some quality of life. Right now I can take care of myself. Rob has to help me do so much around the house. I wish I could afford an ocassional cleaning lady but that money would have to come from somewhere else. I can manage to do the laundry as I have both machines on the same floor as my bedroom. I can pick up a few groceries on my own but I need someone if I buy anything heavy. But I digress.....it's about Rob tomorrow. Have I mentioned lately how grateful I am to have Rob? Words are not enough to convey how I feel. When you are faced with your death you take a long, hard look at the people who have been a part of your life. I had so many friends years ago....so very many. After the first heart surgery I realized that most of them wanted to be around for the good times but not the bad. My friend Laura visited me a lot in the hospital. I will never forget her kindness and over the years have tried to return it several times. One other friend came once. When I got pneumonia my one neighbor came. As I got sicker and times got rougher friends vanished. Only one friend was there when my father died. My point is this: friends come and go. While we like to use terms such as "best friends" and we can love someone dearly as a friend, you really can't count on them. People are concerned with their needs and their lives. Rob is the person who has always been there for me. Through thick and thin, with laugher and tears. I realize how truly I am blessed. I wish everyone had a Rob (or female equivalent) in their lives. As humans we need others. My illness has also taught me to be caring to others. Many of you will never walk in my shoes. I would not wish this on anyone. I can only take the lessons I have learned and make them positives if anything good is to come out of my illness. I met an 83 year old woman the other day. She told me that she had been "as healthy as a horse" her entire life until two years ago. She was thin and played tennis everyday, up to two hours at a time. She jogged and was full of energy. All of a sudden she got heart valve disease and now is on oxygen 24/7. She needs the two valves replaced that I had done. She told me that she never thought anything like that could happen to her. She kept saying that at least she was healthy for 80 years and didn't know how at my age I could cope. I told her one reason I have been able to cope has been Rob. (My son has also been there for me, visiting me in the hospital and coming to Philadelphia. He calls everyday to see if I need help of any kind and tries to do anything he can to help.)

As I look back on my life I am happy not sad. I am grateful. I have beaten all the odds for survival. My doctors marvel at how much I have endured yet survived. I have lived more in my fifty plus years than many people do who live a boring lifetime. I have loved and been loved. The people who backed away for whatever reasons missed out. The friends I still have continue to support me and I am grateful for them too. Throughout life most people we meet we will be acquaintances. True friends are rare.

Happy tenth anniversary Rob. I don't think I would still be here if not for you. Your love inspires me, your care keeps me going and your faith in me sustains me. You're much more than I could have dared to hope for. Because of you, I feel truly blessed. I hope the best is yet to be.

Friday, August 24, 2012

This and That

The insomnia is really wearing me down. Many nights I get four hours sleep or less. Last night I could fall asleep but couldn't stay asleep. It was a gorgeous beach day but I couldn't have made it. It's been a hard week for me. Whenever I went anywhere I was plagued with the breathlessness.

One day I took the new car to the dealer. The Sirius radio works intermittenly and has for months. Each time we took it there they blew us off because it worked by the time they checked it out. This time we had no radio the day before and I insisted they keep looking. They sent me home in a rental car after I was there three hours and then called me a few hours later telling me to come pick it up. They told me the radio is a computer and is malfunctioning. Many other people have the same problem and Nissan is working on a fix. When they find it, I will be called back for the repair. In the meantime we paid for the radio service and there is no refund. It's so disappointing to be having a problem with a new vehicle. At least it's not a problem that interferes with us using the car. When the satellite radio is out, we can still listen to FM or play CDs which I find puzzling.

Many of  my neighbors have had great vacations. One was in Florida (all expenses paid for her and her children), came back and a week later enjoyed a vacation in Myrtle Beach, S.C. I am happy for her but she is someone who often complains to me about how hard she has it. I haven't been away for one night in years. My mother won't allow us to use her vacation home in upstate New York unless we take her and her dog with us. That would not be a vacation and I would have to arrange for oxygen to be there which is very involved. There is no money for a real vacation. At times I get very frustrated. I am home so much of the time. Often I am lonely and bored. I have begun reading again and am almost done with the second book in The Hunger Games series. We saw the movie the other night which I found very disappointing as compared to reading the book. I also finished Fifty Shades of Grey. I wish I had a hobby I could do at home. I know it will be better when it's not so hot outside and I can enjoy my patio. I have grown tomatoes this year but couldn't take on anything more.

I have an appointment to see a therapist next week. I think I need a fresh perspective on many things.
I still struggle at times wondering where my "friends" are. Some have been great but others have vanished. There have just been way too many changes in the past few years. It's a lot to deal with. I'm hoping the therapist can help me find ways to do so.

Sunday, August 19, 2012

Swallowing the Bitter Pill

My friend Roz used to say sometimes we had to "swallow the bitter pill." I hated that expression and when she first mentioned this about thirty years ago I thought it was absurd. Now, in  my middle years, I get it. Last Saturday I did just that. Rob and I went to Popeye's for chicken. It's about a 45 minute ride and I know my mother loves it. Our neighbor gave us a coupon to buy 11 pieces and get 11 more FREE. I could not resist. I took a box of about 7 pieces to her along with biscuits I bought her. We pulled up and Rob took it to her door. She never even came out to the car to say hello but did call later and thank me. She acts like nothing ever happened. I have just accepted that at eighty years old she may be having some sort of dimentia. I am not calling her a lot as I once did, or going over. I just don't want anything to happen to one of us with the other not even speaking. My father was the generous of my parents. He was tough but when the chips were down he was in your corner, at least most of the time. My mother only thinks about herself. When I recently told her about a cousin I have (the daughter of someone she feels very close to) who was in dire straights and needed some help she lectured me that I could not afford to help anyone. I just let her go on and sent money she needs never know about. Since my father's death she has made very expensive changes to her house which include redoing bathrooms, new sidewalks etc. During this time I was struggling but there was never an offer of help. Being a mother myself, I find this hard to understand. My mother has always been this way, this isn't something new. I have received countless lectures from "friends' over the years that I need to accept her as she is. Easy for them to say. I think I am more accepting now than I have been but it still hurts when you see your parent has little concern for you.

I learned this week that I will be getting an extension on a third party disability claim. It was bittersweet. The fact that I qualify for it means that this company (who rarely approves this) has a medical team who feels there is 0 chance of recovery and no possibility that I can ever work again, in any capacity. The good news is that for another year I can pay my bills and have a bit more than I need. I am going September 6th for a nuclear stress test. I am nervous about it. That will hopefully give the doctor some answers. My EKG has big changes to it and that is normally not good. He thinks he knows what happened (I have for the first time, excluding post surgical pain, had chest pains.) We shall see.

I am trying to make the  most of each day. I have been battling insomnia but just had two consecutive nights of sleep so am encouraged about that. Yesterday we finished the living room paint job (okay I was just an assistant and couldn't do any real painting) and went to Longhorn for lunch to celebrate. Our living room is now thoroughly clean. I am getting a jump on Fall cleaning which never happened last year. My kitchen had a good cleaning too. My closets have been half emptied with Goodwill receiving many donations. All my clothes will now fit in one closet. Not that I bought so much but over the years it accumulated and I rarely got rid of things. For the winter I will need some dress slacks and maybe a blazer. I kept just one in a smaller size from my old stuff. I need to go shopping. Right now it seems like the stores are all having summer clearance. I did pick up some capri jeans and a few tops at TJ Maxx. I might splurge for a winter coat. Not sure yet. The anticipation is half the fun. I did splurge at the Coach Factory Outlet and get myself a black leather bag for a deal. It was $139 with a 30% off coupon. My cousin already sent me the little "pony" for it. For those who don't know that's a little silk tie that can be tied in various ways. I really needed a good bag and my winter boots are black so it will be perfect. Hurry Fall!

Wednesday, August 08, 2012

Sorting Things Out

This week I began sorting through my clothes. I had many professional outfits, suits, dress slacks, blouses, blazers that I no longer needed. I remembered hearing about an organization called Dress for Success who provide women trying to enter the job force with an interview suit. If the woman gets hired, they will give her four more outfits. They even collect and provide accessories such as scarves and jewelery. I was so thrilled to donate about six suits, six blazers, eight pairs of dress slacks, two cardigans, hosiery and an almost brand new pair of nice shoes. My friend went with me and she made about four trips to the car to carry it all in. As I was leaving I got a bit overwhelmed. I didn't expect to have to stop working for a few more years. It's been a difficult adjustment for me. I miss my coworkers and the income I had become used to. I also miss my health insurance from my employer which covered much more. My friend Monica was so great and supportive. We went out to lunch and had a nice visit. When we were leaving the restaurant  my friend just walked up and gave me the biggest hug and told me how much my friendship meant to her and how much she loved me. That was the best medicine ever. I told her that when I thought about her the other day she had always been there in the hard times for me. I came home feeling so much better. I dropped off some other things that were not dress clothes and some household items to Goodwill on the way home.

Today I got up and decided to go to the factory outlets. I called my sister-in-law who was excited to go with me. She loves to shop. We bought some Christmas gifts (great bargains) at the Coach and Yankee Candle stores and then went for lunch. We chatted and laughed and again I was really enjoying myself. My sister-in-law was injured in a car accident and has had numerous surgeries on her one leg. It will never be what it once was and she has pain in it, a lot. She understands what it is like to have to stop working years before you planned to. She knows the frustration of having surgery and then learning that the situation remained unchanged. Still, we manage to laugh and have some fun. She's a lovely person.

On Monday I saw my NJ cardiologist. It was a disappointing visit. There are some new problems and I will need another stress test before we know what has happened. In the meantime I am trying to focus on the positive. Dr. A told me he heard more fluid in/around the lungs. Ugh. One day at at time.

Tonight we had freshly grown NJ corn on the cob and cantaloupe I bought at a farm market earlier today. I have a watermelon, zucchini, scallions and Romaine lettuce I also purchased. The joys of summer.

Sunday, July 29, 2012

Growing Pains?

When we were kids and felt angst over anything my mother said we were having "growing pains." This always stuck with me for some odd reason. I am having these now.

I have always been an "open book" but as I get sicker and learn more about the medicine that didn't work and what my lab tests reveal I find that I am wanting to be more private about this personal information. I deleted my Facebook at first. Days later I removed about fifty people and reactivated it (this is the one I had set up for work and some old friends found it.) There is currently a lot of people I went to school with sending me invites to be friends but for the first time I want more privacy.

There are many issues going on. My mother has not called or spoken to me in three weeks because she didn't like how I responded to some accusations she made against me. Things that happened over a dozen years ago and to me are ancient history are things she wants to question my character about now. Sorry, I am not going to have that. I am a grown woman. I don't beat her over the head over things she did that I didn't like and she will have to learn to be respectful or we won't be communicating. She knows what I am going through and seems unconcerned. I do believe a part of her is in denial but come on.....enough already.
I have several neighbors who are in a financial crisis. One for certain is losing her home. They hint for help and a part of me wants to help them but I am struggling myself. Also, when I speak with them they have just gone out to dinner or done something that I don't do when money is in short supply. Gas is over three dollars a gallon and I try to plan my trips and many days stay home just to avoid spending money. One of them will think nothing of driving over an hour each way. Sorry but to me these are not things that make me want to help you. I have never counted on anyone to help me out financially. So many people feel entitled to that help.

My new medicine is causing me to have sleep disorders. Rob tells me that I am moody. I feel somewhat moody but not sure it's the  medicine exactly. I think it's more that I need to use my energy to deal with all the things I have learned. If my new medicine doesn't work I am in serious trouble in the not so distant future. My PH remains in the severe category. Lab tests show my heart is under a great strain from it. I just want to enjoy my husband, son, pets and garden. I just want some peace and serenity. I feel like George Costanza (a Seinfeld character) who gets highly agitated and screams "Serenity now!" Don't misunderstand......I welcome friends to confide in me and sometimes hearing their problems is a good distraction from my own. That's not a neighbor wanting you to help them out in a financial way. Well, I am going to finish cleaning up the kitchen. It rained last night and a bit today but the sun is out now, filling the kitchen with light. Chef Rob is going to make us chicken piccata for dinner. Yummy. I will make linguine to go with it and a cucumber salad. I love fine dining in the privacy of our own home. We will put on music and have candles and a glass of white wine. Hope you do something that feeds your spirit.

Sunday, July 22, 2012

Hectic but Good

Yesterday was a hectic day. My son arrived early and wanted me to go with him to a car dealership. They sent him a postcard that he had won something (turned out to be two lottery tickets neither of which was a winner.) We both needed to go to the bank and we did that too. We got back and he took out his really nice bike and rode it home. Rob and I went to the Princeton area to try out Joe's Crab Shack which I have been wanting to go to for years. I will tell you a little about my background before continuing with the visit to Joe's.  I grew up in Maryland (with a few early years in Norfolk, Virginia) and when I was born my parents had a tiny house on the Chesapeake Bay. It was a small island, Broom's Island and my uncle had a big house there. Uncle Dick was THE character in our family. He adored children and his only child died shortly after birth. He did everything he could to entertain his nieces, nephews and their children. Often we would have watermelon picnics on his huge front lawn. The adults sat in chairs on his porch and it was a time of great fun. Later my grandparents bought property, as did several of my great aunts. We spent several summers there with cousins from York, Pennsylvania and a grand time was had by all. We laid on the beach we walked up a path too and we crabbed from the pier. My grandmother was a great crabber. She loved the soft shells and I can picture her now with her crabbing net and sneakers around the pier. Uncle Dick had a boat we would go out on. He was a great fisherman and used eels for bait on crab lines. Many evenings were spent at my grandmother's eating freshly cooked crabs which had been boiled in Old Bay seasoning. That and Uncle Dick's own watermelons were some of  my favorite memories of that lost time and place.

Joe's is known for their crabs. July is a special month I think of my grandmother. My birthday is the 8th and her's was the 15th. She often told me I was the best birthday present she ever got. How I miss her. On my birthday I was too sick to go out and have a good meal so Rob took me yesterday. I had some Queen crabs that were fixed Chesapeake style and honestly, they tasted like hers. I had a steamer pot which also had shrimp and a lobster, corn on the cob and a few small potatoes. While I liked lobster tails and claws I wasn't prepared to see my crustacean with his eyes still intact. I couldn't eat him. Brought him home to a neighbor who loves lobster. I had  my crab legs which is what I really wanted. Joe's is pricey and not sure I would want to go again. I did realize yesterday how most of my really wonderful childhood memories are of my grandmother. My mother was not a warm person. It was my grandmother who kissed us at every opportunity and told us how much we were loved. I want to cry because I miss her but instead I smile because I had her. How beautiful to leave your family a legacy of love.

I finally got  my new medicine and began it Friday afternoon. I am not having the severe side effects I experienced with the first. Hopefully it will work. Right now I am having some breathing difficulties. I have the oxygen and the portable tank so I am okay, just inconvenienced. It's going to be another beautiful day here and we are defrosting chicken for the grill. It's the little things that truly matter.

Wednesday, July 18, 2012

The Joy of Laundry

Two days ago my dryer just stopped working. It was distressing as I had paid $240.00 a year ago to get it repaired. It's ten years old and I wrestled with whether or not to get an estimate on a repair. I called a company that had rave reviews and they came out for $65.00. They told me it was the timer and it would be a repair of over $250.00. I really hate throwing things out IF I can get them reapaired so I was going to bite the bullet and do it. The $65 estimate would count towards the repair. Their repairman took a deep breath and told me I was crazy to consider it. He said things are not built to last anymore and that next week another part could break and I was better off putting the money towards a new appliance. Rob and I discussed it and I wanted to kick myself for having spent the $65 to have it looked at. We went to the new appliance store PC Richard and I got a comparable replacement for $399 plus delivery and new hose stuff. It was $100 more but I got the guy to give us a break. I told him it probably wouldn't be long before I would be back buying the matching washer and a stove. The delivery guy was very nice and my laundry service is back in business. I already have clothes in the dryer and two more loads will be making their way there later in the day.

This has been a really tough week for me (and it's only Wednesday.) I am still trying to get a drug pay assistance card from Pfizer. Both the speciality pharmacy and my doctor's nurse practioner are trying to help me too but so far nothing. This plan just went into place two weeks ago and they don't seem to have worked out the kinks. In the meantime, I don't have my new medicine to start. What has arrived are the medical bills for my lung being tapped and my last visit in Philly. Seven grand for ONE day! My insurance pays the bulk but I will be left owing about $1500 for the procedure and visit. That's just too much for me. Somedays I wonder if I can afford the medical care I am receiving. It gets depressing. Since my birthday I have collapsed into tears several times. This is not typical of me. I am not sleeping as well either.

The other day a "friend" called to complain to me about her problems. I couldn't believe how she went on and on about her job (I would LOVE to be able to work and have my income back), her husband (someone she should have divorced years ago but never would because of his earning power) and her son (who she has spoiled rotten and no one including her can stand.) I let her ramble for quite awhile and then calmly told her that these were all things she had the power to change. I told her how lucky she is that she can change the situations. I then told her that it is very difficult for me when I am dealing with things that I have no control over to feel sorry for people who won't help themselves. I think I am losing patience with people who never appreciate what they have and only see the negative. Life is short. I struggle to make mine the best it can be. At times I get overwhelmed but it passes and I move forward. It's the only way to get where I need to go.

Sunday, July 15, 2012

Waiting for Copay Assitance

I am fighting to hang in there so to speak. I got approval from my medical company that they will cover all but $450.00 per MONTH of the new medicine I need. Needless to say with my income so drastically cut, I cannot afford that copay. I have been in touch for about ten days with Pfizer the drug company for copay assistance and am waiting for them to complete that so I can get on my much needed new medicine. These companies do have assistance for the orphan drugs which are so expensive. Based on my income, my copay may be only $4 per month. That's some difference. In the meantime my fluid retention and breathing battles continue. They really can't keep the fluid off without risking my kidneys so I do the best I can.

This past week I wrote the blog entry about my birthday. On Monday my mother began to make accusations against me from something my EX told her 13 years ago. My reaction: are you kidding me????? She then interrogated my son who was not happy. I have never told him the details of my divorce from his Dad. He shouldn't  be burdened with all that. My mother claims she went to my old house and spoke to my ex and he told her things which both he and my son swear he did not. I am now wondering if she has some form of dementia. Regardless, my plate overflows and I am not taking on her issues right now. She never worried about mine and right now is unconcerned with how the stress of her attack has affected me. She has never even called back to say she was sorry for the manner in which she spoke to me. I'm sure she isn't.

I finally got my birthday present from Rob. I had wanted a back splash, made of glass. I had really wanted the sea glass one but the problem was it was very light and wouldn't go. The one I selected has different colors, some light, some dark. It took us nearly all day to get on the wall but I think will look good. Rob is ready to grout it in a few minutes with the antique white grout I selected. It was more of an undertaking than I thought it would be. This past week my mother-in-law and aunt both sent cards with money. We used some Friday night to go out for dinner and this morning we went to a great breakfast place called The Turning Point. They have ceramic skillets with potatoes on the bottom and your eggs on top. You can get variations such as bacon, avocado slices etc and they are very tasty. We both enjoyed it very much .Eating out is now a treat and something we rarely do. That was the easiest thing to hack from our budget.

I have deleted my Facebook. I just find too many people want to know what is going on in your life but really are not a part of it. I tend to be an open book but now with my health declining, I am feeling I want more privacy. I cannot grasp why some people want to claim to be your friend and have no personal contact but just post a comment once in awhile on Facebook. That is not me. The vast majority of people on mine are people I see or at least talk to. It seems very artificial in many ways to me. More and more I feel that many people don't understand the difference between friends and acquaintances. Friendships take work and if left dormant they slip away.

Thursday, July 12, 2012

Honesty isn't always the pretty route..............

I would like to tell you about what a wonderful birthday I had. I really would....but it wouldn't be true. I have always prided myself on being an honest person. This is what happened............
My sister was supposed to come the weekend before my birthday weekend. That would have been good. Instead she changed her plans at the last minute and told my mother she would be here for my birthday weekend. I told my mother that knowing what always played out things would not go well. My sister wanted to go to a picnic with her friend on July 4th and planned to come the following day and go to a flea market about 45 mins. away. I told my mother immediately this was NOT a good idea for me as I could not be in the heat and walk that far (with or without oxygen.) My mother kept pushing me and then that morning my sister called and said that they would only go as far as I could. This is one of those instances where you say why didn't I just do what I knew was right for me and stay home? We went and I was shocked by how many vendors there were. I agreed to go up and down a few aisles but I was finding it very difficult to breathe and the heat was wearing me out. I held up as long as I could and insisted we go into the air conditioned buildings. My mother who is 80 looked as though she was ready to collapse and when we got inside there was an elderly gentleman who had passed out. We then went to the part where they sold Amish crafts and food. My mother always wants to buy whatever is cheapest but I wanted a lunch so she and my sister got sandwiches while I had roasted chicken with veggies. After that my sister wanted to make a detour and ride by the house she lived in 30 or so years ago, then my old house and then we went home. I was exhausted. Friday morning she got my mother up at 5:30 a.m. so they could go to the beach and just watch the waves then they did a lot of shopping. That night Rob and I went to the beach and walked on the beach ourselves. On Saturday my mother and her did their usual local flea market, then to numerous stores and a yard sale and then called for me to come see her daughter's wedding album in the afternoon. I went and while there my sister stated she would love fried chicken. I said we could go to Popeyes which I had coupons for  and I drove about 45 mins. to get there only to find they were closed for renovations. My sister then suggested KFC. I explained I don't eat that as the oil disturbs my stomach but she really wanted it so I drove her and my mother there to get some. After that I drove them home, came home, gave Rob his KFC while I had a PB&J. About 9 p.m. my sister shows up at my door with a Slurpee for me. I was half asleep but she came in and wanted to talk about a family matter which she blamed me for. Since then I have verified that there is no truth to this, that in fact she took some facts, put them together to come up with the wrong conclusion. I was very upset and couldn't even sleep. When I can't sleep I am not using my breathing machine nor getting the oxygen I normally do. I was feeling awful the next morning. My birthday morning. Rob had a card for me. He was supposed to do a backsplash of tile in the kitchen of tiles that look like seaglass that I had picked out. In fact, I thought being gone Saturday would give him the opportunity to start it. He didn't even have the tiles. My son called and wanted us to meet him and go out for lunch. We went and I was feeling so poorly that I couldn't even go into the restaurant and felt I needed to get home on the oxygen again. I was just home resting when my sister called wanting to come over. Rob told her I was not up to company. I was still upset by the previous evening and I just wanted to rest. She later called again and insisted she drop off my mother's card and her gift. (My mother had told me she would be leaving first thing Sunday and I thought that then we would go out for dinner. Rob didn't get me a cake as I had planned to have cake out.) Apparently she had changed her mind and was now going to spend the night. Another plan out the window. I ended up having a few frozen pieces of chicken for my dinner. I had half a bagel in the morning. So  much for my birthday: no meal, no cake and feeling crappy all day.
The following day when my sister left I told my mother how upset I was. My mother insists that I am upset with Rob, not my sister, and said she had not agreed to go out to dinner with us anyway. Nice. Last night I was in bed by 9. I am not feeling well. I learned that the medicine I was taking has not worked and they are busy getting me approval for another. I wish some people would a. think of others b. get the facts straight before accusing someone of something they never did c. learn to say they're sorry when they made a mistake. I'm really tired of people who can have an opinion on everything without facts.

Saturday, June 30, 2012

As One Door Closes

Tonight I met with my former coworker and friend of about four years, Maria. It was so good to see her. When I was "let go" because I was too sick to return to work after six months I had texted her and asked her to please gather my personal property and hold onto it until I could get it. Last night when she arrived, she had a large shopping bag in hand....in it were the things that occupied my small work cubicle. While I was glad to get some of them back it was like being hit with a two by four. Her it was, the proof that I no longer worked for a company that I had been so big a part of for four years and the proof that I would not be working again. I don't really get why this has been so difficult to understand. My doctors cannot believe I worked as long as I did. The last two years were constant hospitalizations and me having to take months off for short term disability. Even I felt I was no longer capable of physically working. I guess I just wanted it to be MY choice. The doctors made it clear to me that I am battling multiple issues. They actually uncovered something none of us were aware of that they will be monitoring. It might be serious, time will tell. It's still just so hard for me to accept that my working days are over. I keep wondering why it's so hard. Perhaps because I was so proud that after years of being told how I could never support myself, I proved that I could. It felt so wonderful to get MY paychecks. It gave me self esteem when I needed  it so badly.I now get a small disability check. It's so much less than when I worked. I have time to find ways to spend money but not much money to spend.

I am certainly glad that Rob has been so supportive. He told me from the start that we would find a way to get by and if not he would get a second part time job. I hope it never comes to that. So far we have been getting by. While I didn't receive a lot of money from my Dad's insurance it was enough to make a difference in our lives. I have a new mattress, new dishwasher and we have a new car which is half paid for. Now that that money is gone we will have to be more careful. We did refinance our house and the lower payment is nearly what the car payment is. I have reduced our bundle plan significantly and reduced our cellular phone bill  as well. I am cooking and we do almost no take out food. We never eat out more than once a week and we don't go anyplace expensive. Those are perks that working covered but aren't really necessary. I have learned we have much more than we truly need. I am so grateful in this economy that I own a home, a car and have medical care and food but most importantly I am grateful to still be here and to have a husband and son who love me.

Friday, June 29, 2012

Silver and Gold

The other night I saw a woman on a reality show giving a toast and she said that she had been a Brownie and that they had this saying "Make new friends but keep the old. One is silver, one is gold." I never knew that was a Brownie saying, but it's a saying I always liked. As I have matured I have realized that I spent way too much time counting on my "old" friends who had moved away and moved into other circles to remain a part of my life. Ironically, I felt they turned to me when going through their hard times but then I was forgotten until I was needed again. I have now come to terms with most of this. People change. They mature and their needs change and they find others who are like them as they are now. While they may love to reconnect with someone from their past once in awhile it's too much effort to try to keep a long distance friendship going. I am sure that there are exceptions to his but I honestly believe they are few. The sad part for me was that I had met many new and exciting friends but I always kept them at bay thinking that I had some very dear friends and didn't really need too many others. How wrong I was. When I was in the hospital in Pennsylvania last summer several of my former coworkers wanted to make that hour and a half drive to see me. I told them not to, that I looked bad and wasn't up to company. (Foolish me thought that one or two of the "old" friends would show up.) My friend Maria kept texting me, sending me emails and stayed in touch. She wanted to meet but I wasn't up to it.

I had a revelation one day. Why was I putting so much into old relationships that clearly no longer existed when I had new people who wanted to be my friend? I looked back at all I had been through and realized there were a handful of people who had been here for me the past four years. Not the people I might have chosen but people who chose ME. I put away my fantasies and realized that I had friends alright. These people saw me through three years of hospitalizations, another heart surgery, my father's illness and death. The past four years have been some of the roughest of my life. I realize now that those silver friends are the ones who will be gold. Especially the one who was with me the day of my Dad's funeral.

This evening one of my friends will be taking me to dinner. I am so excited. She's a great person.  Instead of dwelling on what I have lost, I am moving on with excitement to the friends who are becoming golden. I've let go of my unrealistic hopes and dreams and found that I need new ones. I hope several years from now I will be looking back and reminiscing with these friends about the good times we have yet to have. I'm eager to get started.

Saturday, June 23, 2012

Ahhhh Summer

Well, Summer officially came on Thursday. I was so psyched that day, having been invited to my neighbor's party for her daughter who was getting her driver's license. Had been looking forward to it until she texted early that morning that it was cancelled. I decided I still needed a day out. I got showered and went to the mall. Haven't done this in a very long time. I took my wedding ring which was now two sizes too big in to have it made smaller. When I got it I had wanted an eternity ring and they told me that it could never be sized but the half eternity ring could so thankfully I had chosen that option. I pick it up today. After taking care of the ring I got my hair cut. Nothing severe, just a few inches taken off but it had no shape and now with some long layers cut into it, it looks so much better.
When I was done getting my hair cut I decided to buy a few clothing items. So much of what I had doesn't fit and what does fit I am wearing out by constantly wearing. I ended up with a denim skirt, new bra, baby doll pjs, and a wonderful long black skirt. I came home feeling oh so much better.

Yesterday we finally concluded the two month long procedure of refinancing. We had our "closing" here in our home. We reduced our interest from 7 3/4 to nearly 3 3/4 for the next 20 years. Can't beat that. Our old payment is reduced enough to make Rob's new car payment. If you have a high interest rate and equity in your home, now is still a great time to refinance. We resisted the urge to take  more money than we needed. I also reduced my bundle package to save $70.00 per month. I will have less internet and fewer tv channels and VOIP phone service but I needed to trim that down.

For those of you who follow my blog, you might remember my post about the doctor charging Rob for a visit to interpret a test he didn't get the results for. I am happy to report that they didn't charge us for hte visit. The test deemed defective had to be redone. I stuck to my guns and they redid it without charging us a second time. I also got the doctor's office to wave the charges from them.

I got my yearly mammogram done and it was normal. On Monday I have another CT scan scheduled. It's too complicated to explain but if they find any more fluid I am going to have it drained again so they can biopsy it. I am hoping they don't find any. The last time was costly and painful. I am moving foward, crossing things off my to do list and I only have two left. I live close enough to the beach to get there in less than an hour. Last year I was only there to attend a wedding in September. I am so hoping to actually get there and walk along the beach this year. (With or without an oxygen tank.)

Tuesday, June 05, 2012

Drowning in a Sea of Paperwork

Yesterday was so frustrating. It started out with me having to run several errands and it was pouring down rain. While I was on my way to the vet to pick up the dog's heart worm medicine, I noticed that the light on my dash was blinking indicating tire pressure issues. I had just bought new tires about a week ago. I ran to Costco after picking up the meds and they said they would check it out for me. They found nothing wrong and reset the light. We shall see what happens with that.

I got home and found a bill for a physician's visit for my husband. That visit was a joke because the doctor's staff had not seen that he had received the test results done in their facility. We sat an hour waiting for the results to be faxed and finally the doctor indicated that we might as well leave. There was no consultation or exam. I called the billers and explained. When Rob came home and I told him about this he told me that the facility had called him and told him that the test had been defective and he needed to do it over again. I was floored. I immediately called the manager of the facility and asked her what was going on. She was in the dark about it but promised to get in touch with me once she had the information. I advised her that our copay for the test was nearly $400.00 and if their equipment was defective that was not OUR problem and we would not be paying for a second test. I am waiting to get a callback today. I also received a notice from our health insurance that one of my providers had advised them I had Medicare in addition to my private insurance. NOT SO. I was so angry and of course by the time we got this information the provider's office was closed. I called them this morning giving them half a dozen examples of claims which had incorrect information on them. They are investigating this and will get back to me.

I find it very sad that while I am dealing with my illness I have to deal with all this other stuff as well. Doesn't anyone do their job correctly anymore? Doesn't anyone have common sense enough to realize that if their equipment was defective the patient should not have to pay a second time?
Come on. I have begun a three page letter to the hospital asking them to look into all these issues. The test was done back on March 17th and we are just now learning there was a problem? My copay was required to be given the day of the test. There is zero chance I will be paying again.

I have to go get my INR checked today. That is to make sure my blood thinner is working. Good thing they are not checking my blood pressure today. I'm sure all this stress is going to work against me. I am trying to relax but it will be a lot easier once I get some answers. The only acceptable answers are "We fixed the problem." and or "It will cost you nothing."

Friday, May 25, 2012

Memorial Day weekend

First a quick update on the health front. Since a few days after having the thoracentesis I have been running a low grade fever and having chills. I called my lung doctor who said that this can happen after the procedure and to give it a few days to go away. It didn't and the past few days I was also short of breath. I went to see her today and she is concerned that there might be some bacteria so she sent me to the hospital where they took blood cultures. I got stuck in both arms (the right arm had just been stuck two days earlier for my INR.) She gave me a script to start antibiotics because if there is any bacteria floating around it could infect one of my heart valves. Suffice it to say that would be quite an ordeal to deal with. So hoping and praying this is bacteria somewhere else and will go away soon.

This weekend is Memorial Day weekend. It always makes me think of my father and his father. His father served in World War 1 and my Dad in the Korean conflict. My Dad served over twenty years in the Navy before retiring. He enlisted as soon as he was old enough and stayed in until my mother told him she just couldn't handle four kids on her own. He was usually out to sea (he saw the world including Greenland, Japan etc.) for months at a time. He was fortunate to be able to use his diver's training and medical training to land a job as a hyperbaric chamber engineer with Union Carbide. Later Mount Sinai Hospital in Manhattan hired him to run their chamber and he stayed there until his last retirement. He was a hard worker and when times were tough he had two jobs before landing the Mount Sinai job. They were really good to him and he made friends there that he kept until the end.

Being proud of his military career my mother called the service when he passed away. Because of his status they sent military people there for his funeral. It was so touching and moving and he would have been so proud. When they played Taps it really broke me up. Some days it is still hard to believe he is truly gone. I go to his grave often and it comforts me. On Memorial Day I used to take something over like cupcakes that were red, white and blue and tell him thank you for serving our country. I am proud of the sacrifice he made and I remember that it was hard on us having him gone for those long months. Thank you, Dad, for being a father I could be proud of.

Monday, May 14, 2012

Moving Onward

I am so glad my procedure went well and is now behind me. They numb you but they put pressure to get the fluid out and I am bruised. My stomach looks like I was beaten because of the stomach injections I have to keep the blood thin until the coumadin gets high enough to stop them. I am still sore and achey. I have had this procedure done three times and each time is different.

I had a good Mother's Day. We went to Ruby Tuesday's for lunch and then we used some gift cards to get great deals. I had used the charity rebate at Macy's and had a gift card for $46.00. I also had a Macy's coupon to get $10 off if I spent $30. I found shorts and a nice top. With the $10 off and the $46 gift card I paid $6. We then went to Sears with a $30 gift card they had given me. We had a lot of problems getting a minor part for a new appliance and I complained. It pays to let them know of a bad experience. We used the gift card and added just $9.99 to it and have a  new weed whacker. Our old one was about ten years old and not doing well. My son came and we got him a new phone at the cell phone place. They had quoted him a  price of $130 for a NONsmartphone. I told him no way! I got the manager to give it to him for $60 with a $30.00 rebate. We picked up two small cakes and a pie and went to my mother's. We had a nice visit there before coming home. I hope everyone else had a good weekend.

Wednesday, May 09, 2012

My Week

This has been another busy week and it's only Wednesday. On Tuesday I found a Popeye's chicken place not so far away and took my mother for a Mother's Day treat. She loved it and browsing through a Salvation Army thirftstore afterwards.

Today I go with Rob to see his specialist at the sort of local hospital, at least it's in New Jersey. Before going there I need a quick blood test at my lung doctor's office. On Friday I am going to the local hospital to have the fluid drained from my right lung. I am a bit nervous about it. If the procedure goes well it's not that bad. They numb you with a needle that is about the length of a shish kabob holder. They are only supposed to take one litre of fluid out at a time (must wait another hour to take another.) The first time I had it done, things went well and just over one litre was removed. The second time was a different story. They removed one and a half litres and there was a lot more fluid there so they put a chest tube in. That procedure was very painful and I ended up with some broken ribs. Having the tube in while trying to sleep and move about is a lot to deal with. The fluid goes into something that looks like a plastic radiator. If they collapse your lung while removing fluid, you also get the tube to help it reinflate so the possibility of getting a chest tube exists. That is what concerns me. (That and the fact that I had to go off of my blood thinner to have the procedure done.) After the procedure I will have to take some painful belly injections to thin my blood more quickly. I get to administer those myself and they burn.

If I do need the chest tube, I won't be coming home Friday I will end up admitted to the hospital, at least for the weekend and until the tube is removed. I want to be home on Sunday, which is Mother's Day. I have already done my part and my sister will be here to take my mother out on Saturday for dinner. If I am home, they will pick up a cake and bring it here on Sunday.

In any event, Happy Mother's Day to all the mothers. In my book, if you care for furbabies you qualify as a mother. I know the loving care I give my boys here. Like children, it's not considered work but a labor of love but you worry about them the same as your children.

Thursday, May 03, 2012

Joy and Friendship

The past few days were an emotional roller coaster. I have a neighbor who has become a good friend over the years, Stacey. She has a really soft heart and several years ago she learned that her father had another daughter after his break up with her mother. For years she knew this girl as the daughter of her father's girlfriend but didn't know it was her half sister. When her Dad told her that Megan was her half sister she embraced her. She took time to really know her and made her part of her family. I applaud her for that. I have heard stories where people have approached biological family members and been rejected by them. A few months ago Megan became quite ill. They thought at first she had the flu but after several trips to the emergency room she was admitted and they quickly found she was in heart failure. Since she was only 24 years old and in otherwise good health it was shocking. They got her stable enough to go home after a few weeks and things seemed to be alright until a few days ago. She went downhill so quickly and had two emergency surgeries on Tuesday. During the last surgery they could not remove her from life support and said they would have to leave her on it hoping to find a heart for her. The family were besides themselves. Yesterday about four p.m. the call came. Stacey was just getting home from the hospital when she got it. She told her husband then ran across the street to tell me. We cried. We jumped up and down. We couldn't stop hugging. It was a beautiful moment. Stacey told me about the 21 year old who had died suddenly just hours earlier. We both discussed how generous and caring it was for them to share their beloved's heart and give Megan a second chance. I am so grateful and someday Stacey hopes to meet them and thank them in person. At 11 p.m. the surgery began last night. No updates yet but I have spent a restless night praying for and sending positive thoughts to Megan. I told Stacey that Megan is truly lucky. She will never know what her family went through while she remained unconscious. She will wake up in some pain, but no doubt feeling oh so much better with that new heart beating. I cannot tell you the joy I feel right now. Last night Stacey kept thanking me for being there for her. I told her that this is what friends are for. When my Dad died she hugged me as I cried the morning of his funeral. Real friends share tears of sorrow and tears of joy. We have shared both and it was just a beautiful thing to share in her joy. Maybe the most valuable thing I have learned is that no matter how old we get, we can still make new friends that we know we will always be connected with. There are good people we haven't met out there, we just have to be open to giving them a chance.

Saturday, April 28, 2012

Sunshine and Thoughts of Food

I have been feeling better since shedding the fluid. I actually began to cook a few meals again. I used to buy all these magzines and things were rarely made. I went through them last year and cut out recipes of interest and made folders which they went into. I just came across one that had not been placed in a folder and it looks interesting, especially with spring here and I find that I am finding and eating a lot of berries. The Driscoll strawberries just call to me as I make my way down the produce aisle. I bet I have consumed two pounds of them this week. Since my diet is so restrictive of salt I have relied more on fruit (watching the sugar content) as snacks. I found a recipe to make Creme Fraiche. There is nothing like a bowl of fresh berries with a large dollup of Creme Fraiche on them. Yummmy. It is quite expensive though so I am going to try making it. This article states that 8 ozs. is $7.50 but you can make it for $1.00. This I have to see! It does have you buy buttermilk but I also can use that to make Irish soda bread which is a big favorite here. I am going to post the recipe, if anyone tries it please let me know how you like it.

CREME FRAICHE (Makes 1 cup plus 2 Tablespoons)
1 C heavy cream
2 Tbsps. low fat buttermilk

1. Stir together cream and buttermilk in a large, clean glass bowl or jar.
2. Cover tightly with lid or plastic wrap. Let stand at warm room temp. overnight or until it has the consistency of sour cream.
3. Refrigerate 5 hours or until very cold. It can be kept, refrigerated, up to 1 week.
Each tablespoon as 45 calories, 1 gram carb, 3 grams saturated fat, 5 mg sodium.

This week I had something going on nearly everyday. Next week will be the same. I am getting caught up on doctors appointments, dentist visits etc. I haven't seen my eye doctor, gynecologist etc. in over a year. I finally got caught up with the dentist and am getting my teeth cleaned Monday. That will be done. With me not working you would think I would have a lot more time to do these things. I have been dealing all week with insurance issues. I am very unhappy with United HealthCare. This was the insurance I had through my employer. They paid for some of the visits for my pulmonary rehab and yet denied about six others. The provider has called me nonstop about this. I have called and spent hours upon hours with United HC. I am now dealing with their "Rapid Resolutions" Dept. and I certainly hope to get this resolved. The provider is threatening to turn me over to collections, claiming they told her I am responsible. Since this was a covered benefit and I called to make sure that I needed no special authorization I fail to see what the hold up is. I now have Blue Cross and I can tell you that while it's harder to get authorizations for CT scans and such the bill paying goes much smoother. I pay 20% with Blue Cross but it's worth it. I can see any doctors I want, without referrals. Unfortunately, the DME (durable medical equipment) which I need such as oxygen costs me that percentage as well. With my other policy I paid nothing. This means having a large oxygen bill should I choose to travel OR trying to travel without it. I cannot fly without it. I use it to sleep overnight. I am sure if I went overnight one night I might be okay but I couldn't function long without it at all. Well, Rob is sleeping in today. I got up with Duffy at 7:15 and am letting him catch up. Poor guy is so tired he is falling asleep in the evening while trying to watch tv. Duffy has a habit of drinking a lot of water before bedtime and by 6 he really wants to go out. I know I could pick up the water bowl but I just can't do that. There are times you really need a drink of water.
Have a great weekend!!!!

Wednesday, April 25, 2012

These were pictures from Sunday of our visit with Rob's Mom and niece Cassandra. We were exhausted, had about four hours sleep the night before and we hadn't even combed our hair when they arrived at 8 a.m. for a final cup of tea. Honestly, we usually look better.

Sunday, April 22, 2012

Update Continued

I went to my lung doctor the day after the last post. She sent me for a different x ray and they found that there is fluid in/around my right lung. I am already on very strong diuretics. She wants to wait two weeks to see if it will reduce or clear up. If it is the same or larger they will consider whether or not to remove the fluid. Since I am on blood thinner this is a big deal, I can't have it done unless I go off of it which puts me at risk of a blood clot. They have to weigh the pros and cons. Also, my oxygen level was low and she wants me on oxygen 24/7 for the time being. This means filling the portable when I go out and taking it along.

We had a weekend with my mother-in-law and niece. They had a difficult time getting here as a wrong turn was made, throwing them off kilter. It ended up adding about two hours to their trip. I finally went and met them when they got close. We had a nice cookout Friday night and then we took them over to their hotel. They wanted to stay at the Residence Inn which had an indoor pool and a fridge and microwave. On Saturday we went and got them. They came here then we went to the cemetery so they could see my family plot. After that we went to Target and bought our niece a bathing suit (she had forgotten hers.) We went out for a nice lunch and then took a cake over and visiting my mother for awhile. Back to the hotel for swim hour then back here again for dinner which Rob prepared which was delicious. After dinner our good friends came over for a quick visit and we once more took them back to the hotel. They will come by for a visit tomorrow morning and head home. I was relieved that today was beautiful, although rain had been predicted. I hope they have good weather for their trip back.

Thursday, April 19, 2012

Quick Update

I went to Philly today to see my PH specialist team. I have gained (gulp) ten pounds of fluid this month. Yes, they can tell by my swollen ankles, legs and belly that it is fluid not actual weight gain. They hear something in my right lung. Tomorrow I go to the lung doctor so she can figure out what is in there. Fluid? Residual pneumonia? I would imagine I will be sent for an x ray if not a CT scan in the next week or so. Those require approval unless done in the ER. I had to use my portable oxygen to get from the car to the office because whatever is in there has me short of breath.

My mother-in-law and niece will be here Friday. I went out and got snacks that a 13 year old would want and special treats that MIL likes as well as a nice hanging basket for her to take home with her. I also got some for my backyard which is shaping up nicely. Have some pots planted and things are blooming. It's looking like Spring. I got Mr. Duffy McSheltie groomed and he looks lovely. He loves his groomer Jamie. I was so bad that day I had to pay a neighbor to drive us to the groomer and help me with him. Rob was able to pick him up. This lady loves him and we have her care for him if we go anywhere. She doesn't like to make money but we insist and as a senior I know she enjoys having the extra money.

Will update after the lung doctor. Hoping it is not the pneumonia because I was diagnosed with it about a month ago. I've already had two rounds of antibiotics for it.
If it's still there that could mean IV antibiotics which means another PICC line. I've already had four in the past three years. I feel my quota has been reached.