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.