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.

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.

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.

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.

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.

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.

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.

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.)

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."

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.

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.

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.

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.

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!!!!

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.

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.

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.

The Value of Comments

Dearest Readers:

A comment that was posted that really made me think. I am so grateful that some of you take time to comment. (I read many entries that I don't leave a comment OR the captcha is so difficult I try to leave one, get frustrated and give up.) But I digress, I would like to apologize to you. The comment made me realize that often when I am down and feel I need some support, I turn to this blog and you to give it to me. I have failed to share the joy that I often feel. It's like having a friend you complain to but never share your good times with. Unfair to that person. I promise I will try to give you more of the good times. In order to truly know someone you need to see both sides.

Just this morning I got up early with Rob. It''s nice to see him before he leaves for his long day. I was coloring my gray and he was being silly and we were both being amused by our cat who kept trying to pretend he had not been fed yet. We were being silly, all three of us.

Have I ever told you that the first thought I have when I open my eyes in the morning is "Aha, thank you God that I am alive today to live this day!"? Every time I get mail from my mailbox and there is snail mail I am delighted. Like yesterday when one of my blogging friends Mary sent me an Easter card that had a long message in it. I love you, Mary. All those cards are like gifts of your spirit. Have I mentioned that I keep my handpainted card by Judith HeartSong in a special place just to look at it and think of what great friends, supporters her and Virginia have been?

Yesterday afternoon one of my neighbor's dropped in just to bring me a few things that she didn't want and have a chat with me. I have three neighbors who do that, just find a reason to stop by and visit for awhile. I love that. In my old neighborhood I lived in ten years ago that just didn't happen. On Sunday my neighbor's 17 year old daughter came over just to see me and bring me a little something she thought I'd like. All of those things bring me great joy. What really made me joyous today has already happened. I watched Rob practically skip down the driveway to his new car (which men like to call a truck). Technically it's a crossover, car that looks like an SUV which is usually technically a truck. Then he got in and I saw a smile that lit up my heart. I watched him drive off and I thought how grateful I am that I got to see him get his first new car and enjoy it so. I'm one of those people who is much happier in the giving than the receiving, magnified when it is for someone I love. Life is beyond good. On Sunday we learned that Rob's mother is going to bring his niece and come for a visit. It's been four years since I have seen her and three since Rob has. We have missed her terribly and she is as excited as we are. The picture above is Cassie with her Mom, Rob's baby sister Jennifer who died nearly five years ago. We loved her dearly and being with her daughter is like having a part of her.

While I have all the good, the knowledge of my physical issues is always there. I don't know how much time I have left, no one does. There are days where my mind wants one thing and my body just can't do it. Those days are rough but please know that I get through them, determined to have a good day another day. Most importantly, please know that I have great joy. I am on the edge of glory at times knowing that I was here, I loved and I am loved. Even when my body is gone, those who knew me by heart will keep me with them. Knowing that gives me joy.

On and On

Friday night I began to run a low grade fever again. I called the lung doctor and spoke to the covering doctor explaining all that was happening. She called a script in for me and I got the first dose that night. I felt so so Saturday and on Sunday I was really not well. I did manage to prepare two quiches and two desserts. My son who is a vegan came with his own pasta dish he prepared as well as some egg free bagels that he made vegetable sandwiches on. He is creative and his food is good although some of it I cannot have because of the high sodium content. I also made a delicious fresh fruit salad. My mother arrived just as the food was coming out of the oven. We sat down and she began one of her crying episodes. She had misplaced her car keys and gotten completely overwhelmed when in fact they were still in her purse. My son tried to explain to her that as people age their memories are not as sharp and it was nothing abnormal. I suspect she wanted sympathy and then she finally gave up and we began our lunch. When we were done she immediately wanted to sit on the sofa and announced that she wanted to sleep. Finally when she realized it wasn't going to be quiet as we were all cleaning up the kitchen, she decided to go home where it was quiet so she could sleep. It was very disappointing to spend an hour and a half of prep time and have someone show up to eat and then leave right afterward. I realized that my temp was going up at this point and Rob insisted that I rest while he finish cleaning the kitchen. When he got done he stretched out in the recliner and fell asleep. I wish I could have slept.

This morning I went back to the ENT. He thought my nose looked healed but when he touched my right nostril it began to bleed. He decided it had to be cuaterized again. This really hurt. It has been six weeks since I have been able to blow my nose or sneeze normally. It will be three more weeks at least. It's so frustrating. I came home and just took it easy until Rob got home. We had to go to the grocery store. The kitty needed food and there were other things needed as well. Got that done, it is so much easier when Rob is with me. Of course we forgot the handicapped placard so he had to drop me off and then go find a spot. It is supposed to rain tomorrow and I am under orders to call the lung doctors and go in if I don't feel well or if the fever persists. I really don't want to deal with this again.

Hope you have a good week.

Happy Holiday

I want to wish everyone a good weekend. For my Jewish friends Happy Passover. For my Christian friends Happy Easter. For my friends who celebrate neither Happy Spring.

I have gotten several pounds of fluid off of me finally and am feeling somewhat better. I am still not sleeping well with early wakening so I still feel tired but I had a great day yesterday.

We are not having a big celebration this year. I am just making a few quiches with fresh fruit salad for brunch. Last year's huge preparation and clean up was too much for me and Rob ended up doing most of it. Neither of us need that again.
It will be more of a day of rest for us. Hope it is a day of whatever you are hoping for.