Wednesday, December 30, 2009

The Eve of New Years Eve

Today Rob had a nice surprise. They let him leave work after half a day and sent him home with his paycheck and he will be paid the rest of today, New Year's Eve and New Year's Day also. YEAH!!! The joy of working for me is the paid days off. I missed all my paid hoidays this year: Labor Day, Thanksgiving, Christmas and New Years. I feel cheated.

I went back to my doctor Monday. She said I am not ready to return to work Jan. 4th as planned and pushed the date back to Jan. 31st instead. I think that was a good idea as I get tired during the day and usually still require a nap. Besides that I need to monitor my temperature and I need my breathing to get easier. My lungs seem to be improving but slowly.

Today is my parents 59th anniversary. I told Dad and he seemed to understand. I took them over Maryland crab cakes for dinner and peppermint ice cream for dessert. Dad seemed excited. His highlight of the day is his bedtime snack of ice cream which he prefers in a cone. My mother loved the gifts I bought from Dad for her for Christmas: a periwinkle blue sweater and a silver necklace that looked like an antique white gold disc with pave' diamonds (actually czs).
There is talk about my siblings discontinuing the gift exchange. One brother has never participated but the other two and my sister have always exchanged. It has created some confusion as the kids got older. Once the kids are grown do you continue to give them? What if you do and they don't give you? My brother who has no kids feels that this is unfair to him. It goes on and on. I feel when it becomes so stressful that perhaps it is time to stop. My sister's girls are college graduates (actually both going for graduate degrees part time) and they give us gifts. In that case noone minds but some others who are grown and have kids of their own seem to expect us to give their kids when they don't give us (the aunts and uncles). All of us in this economy struggle with these issues. Curious if any of you have these issues in your family to and if so what you did about it.
Talk amongst yourselves. :)

Saturday, December 26, 2009


Wednesday evening I tried to sleep and never could due to pain I was having near my PICC line. It was so strange that it came on suddenly and once the pain hit, it just wouldn't stop no matter what I did. I called the visiting nurse who advised me I had to go to the ER as it might be a blood clot. (I had already thought of that about 2 a.m. when I came close to having an anxiety attack.)
I showered and drove there. I was taken in quickly but it took about two hour before I could get the arm ultrasounded. It was next door to the surgery room they had put it in at. I found out there was not blood clot however I was told the vein had phlebitis. The vanco was very hard on it and I had two IVs per day for six weeks. They said they thought there were blisters in the vein and I can tell you it was in pain. They gave me IVs in the other arm and another treatment of the vanco and then they removed the PICC line and sent me home. Since I was driving myself I never took anything more than ibuprofen for the pain. I got home around five o'clock. Now both arms were sore but honestly the specialty IV nurse who took care of all of this was a gem. She had helped to put in PICC lines, was somewhat of an expert and when she met me she stayed with me for hours and removed the line herself. On Christmas Eve Rob got home after about half a day and helped me do what I couldn't the previous day.

Our Christmas was rather quiet. Went to my mother's and my sister and her friend was there. We had dinner. I got Dad two gifts to give my mother (saying they were from him). My brother and his wife came also for dinner. Around dinner time we came home (my sister's friend came with us as her daughter wouldn't come to my Mom's if he were there). Quiet evening.

Today we went to Best Buy and I got a new laptop. Never had a laptop before but my desktop just completely went last week. I have 3/4 of it paid for with gift money and got a great deal.
Hope your holidays were peaceful and bright. Now time for the HBO movie of the week.

Monday, December 21, 2009

This N That

Today we went to the grocery store. It was a zoo. People were angry and agressive with their shopping carts. So much for holiday spirit. My breathing was a constant struggle. We took a box of gifts to drop off at my mother's. Rob took off today and carried the box in for me but when I bent over to place them under her tree I was gasping for breath and felt faint. This is happening a lot and it's very troublesome. Remember the only way to know that the bacteria on the valve is dead is to do another TEE (endoscopy type test where they sonogram the heart). It's not something they want to do. The other option is waiting for symptoms to return such as night sweats or running a fever. My mind is all over the place trying to think how I am going to return to work with the PICC line in my arm and type on the computer all day AND have this all in the back of my mind.

Talked to two different neighbors today who are having financial problems. Christmas is depressing when you know you cannot afford gifts for others who are expecting them. I have a wonderful visiting nurse and I simply cannot afford to get her anything, but I do feel badly about it. I am getting a lot of EOBs from the insurance company and I am not opening them. I just feel that I don't want to deal with them right now. Enough pressure over going here and there on Christmas Eve and Christmas Day and I am expected to provide food and I just want to curl up in a ball. I am tired and cold all the time. I am coughing again. I just want something good to happen.

Sunday, December 20, 2009

Friday the 13th????

Today I woke up to about twenty inches of beautiful snow. I woke up at four a.m. and of course that gets the pets ready to start the day nice and early. Had a cup of decaf and pondered all I would do today. I watched neighbors at 5:30 clearing off a car and making a path so the wife could go to work. I felt so badly for her, right now she is the sole supported of her family of four and she is on her feet all day in a grocery store. Rob got up at seven a.m. and decided to wait until eight to start the snow blower. He did take the shovel and clear a path in the backyard for Duffy the lover of the cold to make his way around in. When Rob tried to start the snowblower it just wouldn't start. My son had offered to come over Friday night and start it then just to be sure but we had gone out, it was late and I didn't want him out late at night traveling back home.
Rob did all the shoveling and we were both grateful that the driveway is small and our two cars filled it up. I came upstairs and tried to start my computer. No dice. It simply would not turn on. When the plows had been through and roads cleared I called Best Buy and spoke to one of the Geeks. He said if I could get it in they might be able to fix it in half an hour so off we went. I looked up and saw the computer was now over four years old. It has been behaving badly recently and I knew this day was coming. He advised me that the RAM was not enough for applications I was using and that the power supply was shot. Both things together would have been over $200 for parts alone then figure another $100 plus for labor. He told me that if I had those repairs done something else might go wrong due to the age. In short, it was not worth repairing. I felt so sad. I get attached to things I use all the time. I really wanted it fixed but I knew better than to throw money onto a sinking ship. We went and checked out the laptops on sale. There was a nice HP for $499.00. I was relieved they didn't have any in stock. Rob is pushing me to go away and get it but I have medical bills and my medical future right now is unknown. There's a possibility I will need more intravenous antibiotics and tests. Even with insurance, getting sick is not cheap. For now we switched my larger monitor to Rob's desk top. I had Rob dismantle my old computer desk which was literally falling apart. I kind of feel lost. Of course Rob tells me I can use his computer any time I want to but he uses it a lot. The appeal of a laptop is that if I am sick, I can bring it into the bedroom, or to the kitchen table. I've never had a laptop and I am leary of making the wrong choice. (My hospital does not provide Wifi I asked last time.) I have been coughing a little the past few days. That concerned my visiting nurse when she came for blood. I am starting to feel like a perpetual patient and I don't want to feel like that.
The snow prevented my Dad's home healthcare giver from coming. That sent my mother into a tizzy. He didn't come this morning either but finally showed up at noon. My mother can manage to change his diapers but not well and she can't get him in or out of the bed. Sometimes I have to wonder if he wouldn't be better off in a place with 24 hour care. Some of her friends have told her he wouldn't live long in that environment. I just don't know. He has little quality of life and I know I would not want to be alive like that. I picked up two small gifts from him to give my mother. She keeps saying this will be the first year she won't get gifts from him so this will be a big surprise and possibly cheer her up.
I am so hoping that 2010 will be a good year. This one has been bad right up until the very end.

Saturday, December 19, 2009

Serious Snow

Yesterday I learned that a significant snow would hit the Mid Atlantic. That includes us. I warned my relatives in the D.C. area to watch out and they insisted it would be maybe eight inches top. Not what the weather channel was saying. Rob was supposed to work today 9-3 and he got up early in order to arrive at 8:30, a last minute change. He was one mile away when I got the phone call telling him they were closing and not to come. I couldn't believe it.
He had traveled 45 minutes in the snow on slippery roads and wouldn't make a dime for his effort. He came back home and since we both had a rather sleepless night last night he was glad to be here.
This morning at about 9 a.m. a visiting nurse came to do blood draws. Now that I am back on two IVs a day they have to make sure the level remains acceptable. It had dropped significantly from the week before. This nurse is very pleasant but the smell of smoke is very heavy in her clothing. The other nurses are different. I have only had this one twice. Anyway, the blood is on it's way to a hospital lab and I will find out on Monday if I can continue the two IVs. To be honest I don't feel as well resuming the second. This is a powerful antibiotic that seems to be making me tired and my stomach is out of sorts.
The snow is waxing and waning but when it's all said and done we should end up with over a foot. I want to be curled up in my bed right now sleeping but the fire department in driving around our development with sirens blaring to attract the children. They come out and receive something (I think candy) and if they want, their pictures taken with Santa who is riding on the Fire truck. Last week a different fire company came through. So much for the older crowd who wants an afternoon nap.

Today is my friend Jeanne's birthday. I went to high school with her and she now lives in Florida. Her son just went to Afghanistan last Saturday... with the holidays being so close it's been difficult for her. Her husband died many years ago and she is a single mom struggling in this economy. I sent her a card with money to get herself a bottle or two of wine (knowing this is a luxury she no longer affords herself and misses). She sent me the most touching email saying that with my permission she preferred to buy coffee cards for the troops and send them. I was so touched. If you want to please keep Richard in your thoughts and prayers. He's in mine daily and of course so is his mother.

Wednesday, December 16, 2009

Back in Business

Today I got the good news about my labs yesterday. My vanco trough number which had exceeded the max of 15 last week was down to below 6 yesterday which means
tonight I can resume the nightly infusions! YES!
I am so very relieved because I only have about a week of the infusions left and I want every chance to have them knock out the nasty bacteria that has taken up resident on that valve. Be gone!

Today I bit the bullet and went to Costco (yes alone!) I was careful to lift the heavier items with my left hand/arm and the kind lady at the register offered to empty and repack the basket. When I got everything to the car I lifted it all into my cloth/recyclable bags which I simply love using. The problem with Costco is that they have way too many things which tempt me. I had hoped to spend only $150 and ended up over $240. I finally got a disability check (another yay!!!)
and I needed to restock my freezer and refrigerator and pick up a few other items. With the holidays coming there will be people dropping by and frankly, people know when they come to this house they can expect to be wined and dined. "The beauty of a home is it's hospitality." On the way to Costco I had my favorite radio station on and they were playing all Christmas music which I love to sing along with. It was nice to go somewhere on my own for a change. I will probably be back at work in about two weeks and I am trying to get more acclamated to driving again. I have some terrible nights such as last night where I wake up at 3:30 and stay awake until 7 a.m. then only nap one hour. I can't do that when I return to work. My days are long. I leave the house at 8 a.m. and return home after six p.m. It will not be easy for me right now but I have to give it my best shot. There will be many changes waiting for me, including a new supervisor and new team members. I had been with some of them two years and will really miss the support they gave me. IF I have the person I think I will, she is a very sweet and understanding woman and it may reduce the stress I had previously. We'll see.
I baked some cookies. Poor Rob has to do the stirring of the batter and lifting of heavy items but he is enjoying the cookies. My sugar has been up from the change of meds and I am not indulging in any holiday goodies.
I am so grateful to have a few dollars in the bank, to be coming to what will hopefully be an end to this treatment and to have another holiday with my Dad.
Some days the glass is not half full, some days it's overflowing.

Sunday, December 13, 2009

A Really Good Day

Yesterday, Saturday, was a really good day for me. I had energy and actually felt pretty good. Rob was working and I actually noticed a lot of things in my kitchen had gone without being done. Things like cleaning the glass front to my stove. I got out a spray bottle and began to clean. I cannot do repetitive motions with my arm because it causes the vein with the PICC line in it to spasm and it easily becomes irritated and painful. I did vary what I was doing though and accomplished more than I would have hoped to. I shampooed my hair and blew it dry and I even put on makeup! This has to be the first time in MONTHS I have had makeup on. I got a check from disability (YES! Finally!) and when Rob got home I was ready to go to the bank, grab a bite to eat and go see my Dad for an hour or so. We also picked up a few items for my mother from the grocery store as it was very cold and would have been foolish for her to go out and get them. We had dinner at Chilis and they have a new 2 for 20 dinner menu. Rob got the half rack of ribs and I had a pulled pork sandwich. With that including an appetizer (we got the tostida chips and salsa) and a dessert to share (ice cream topped chocolate brownie) I was severely overstuffed. I am not used to eating like that anymore. My stomach also seems to hurt when I drink the carbonated beverages restaurants serve but when I am looking for diet items it's difficult (sugarless I should say). We stopped off and say my parents. Their church had carolers come and Dad seemed to have enjoyed that. He was having a good day. Twice this week I tried to visit him and he only wanted to sleep.

Today I woke up at 2 a.m. with a stomach ache. Was awake until 4 and went back to bed then. Slept until 8 got up, infused myself then fell asleep again for another two hours. I am not feeling so good today. Perhaps I overdid it yesterday. It was worth it anyway. We are laying low today. It's raining outside and cold. Rob ran to the grocery store and got tomatoes for dinner and my two scripts that needed to be picked up. I have a London broil I am going to make with baked potatoes and a salad.

Today my neighbor's son Stephen is being bar mitzvahed. I wish I could be there to see this fine young boy officially become a man. I did get him a card and will be sending him over a little money to find something he wants. His Mom is so proud of him.

Well time for a nice cup of hot tea. Hope this finds you all feeling okay and avoiding the flus and bugs going around. I am STILL trying to find a regular flu shot now that they say I can have one. I was able to find only the N1h1 which I cannot get.

Friday, December 11, 2009


Each week the visiting nurse takes blood to perform a test called a "vanco trough". Apparently this lets them know when there is too much of the drug remaining in your body. Last week my number was at the top of the maximum allowable and they decided to give it another week. This week it was just too high and I had to stop my nightly infusions. I am really concerned about this as it means I am getting HALF of the dose that I was. Obviously, this is not an easy bacteria to get rid of and it has been there for about four months, best we can determine. When I finished my treatments on Christmas evening I was supposed to get the PICC Line removed. Now, because of the reduction of the medicine, it will have to remain in a few more weeks. I know it doesn't seem like a "big deal" to have the line in your arm but it is very uncomfortable. It is right above the inside of my elbow. There is a clip (to open and close the line) that digs into the elbow. There is a plastic protective covering so the line cannot be moved. Nurses have tried to make it more comfortable. This means I will be returning to work (if things go as scheduled) with the line in. That will be rather uncomfortable. My boss got promoted so I will be returning to a new work area, have a new boss and a new team. I think it will be stressful enough without the line to worry about.

My friend Jeanne's son will be leaving on Saturday for Afghanistan. He is scared and so is she. She lost her mother last year and this is a really bad time for her. She has been out of work and on unemployment and is struggling with that also. Please keep her in your prayers and thoughts, as well as her son, Richard. At times like this it is hard for me because I like to help people in need. The only charitable thing we have done this holiday season was to buy a goat and a beehive for a family in a third world country, that was in memory of my grandmother. I am still waiting/hoping that I receive a disability check. While it seemed promising earlier, I have received yet another letter denying my claim. Since all communication is via snail mail you never know what has crossed in the mail and it is just so frustrating. I will give it one more week before calling the politician's assistant who tried to help me earlier. At least Rob was offered overtime this week, two hours on two nights and he is working both this and next Saturday. That will help. I know a neighbor who is really struggling right now with her husband out of work and receiving no pay, they are surviving on her check with two teens. Her husband has done so many favors for us, fixing our heat etc. What would really make my holidays bright would be to have a gift card for food for them. The older you get the more it is about the giving not the receiving. I want to be able to give again.

Tuesday, December 08, 2009

The rain and snow are coming again

It's felt very cold today. I had a bad night got up later today than usual. Had to rush to take a shower before my visiting nurse arrived. In order to take a shower I have to cover the PICC line very carefully. There is a plastic sheet called Tegaderm that protects the line. Remember this line sits in a hole in my arm. Have to make sure there is no chance it can get infected. I wrap a plastic bag then put tons of tape around it. My arm is nearly numb by the time I finish and am ready to dry my hair. The nurse left and my IV was started about an hour later than normal (after a blood draw) so by the time it was over it was lunch time. Then I just did a few minor things but lost my energy to go shopping. Rob will be working overtime on Thursday and Friday so perhaps those afternoons I will go pick up a few last minute items. I need stuff for stockings mainly. For men this is trickier.

Today my poor sister-in-law, Leslie, had another surgery. She had her leg seriously injured in a car accident several months ago and has had a really hard time of it. Last night she had a horrible gall bladder attack and this morning they removed it. They were able to do this using the more modern method of making three holes. She would have been able to come home after a few hours had she not had a reaction to the anesthesia. It always causes her problems.
My nephew had shoulder surgery has not been a good year for our family health wise.

Dinner is done, including the clean up. Time to kick back and rest awhile.

Saturday, December 05, 2009

Mission Accomplished

Today I got a LOT done. At six a.m. my proxy gift buyer (my son Tom) was in line with a ticket to get a free gift card with the purchase of a surprise gift for my husband. We had gone shopping yesterday and I told him I was going to come back for it and he said I shouldn't and he would do it for me. See, all those thirty-six hours of natural childbirth were worth it so many years later! He was a gem yesterday helping me carry things. He did want me to drive one of those scooter type things because of my breathing but I refused. I told him I need some excercise and if I walk slowly I can do okay. We stopped by to see my Dad on the way home and make an early delivery of new welcome mats for my mother. I can't carry things that heavy and now I won't even have to wrap them.

Today Tom called at 8 to tell me he had the item in hand, not to worry. I got up and began the day. Rob went into our attic which is a job with no pull down stairs, and brought the stuff down. We got our tree up rather quickly as it is prelit. Never more grateful than this year because activities with my right arm are limited. We then had lunch and Rob did most of the work as I supervised but I got two batches of cookies made. We had dinner and watched a movie while catching glimpses of the beautiful snow outside. It was a relaxing and peaceful day although I did a lot more work than usual. I am starting to feel that I am getting better and that in time, I will see a difference with my lungs and the breathing. I was so busy working today that my blood sugar dropped and I actually had to eat a piece of sugary candy. It seemed so strange!
Well, my IV just finished and I am ready to crawl into bed and get some much needed sleep. Hope your weekend goes well and that the holiday spirit grabs you and before you know it you are just overwhelmed with love for your fellow man (and of course woman.) God bless us everyone.

Thursday, December 03, 2009

Feeling Oh So Much Better

I am feeling somewhat better physically. I am not as tired and having to fight to stay awake throughout the day. My breathing remains a struggle if I do anything that exerts my lungs. They tell me it's because my lungs were filled with infection and toxins from July until November and it will take them awhile to get back to normal. I am hoping this will happen soon.

I had blogged about how the state of NJ cut off my disability while I was hospitalized and unable to respond to a letter they sent in a timely fashion. The date they WROTE it began the ten day period in which I had to appeal. Problem is I was hospitalized before it even arrived! Anyhoo, I called my state legislature representative's office and received some assistance. YES!!!! They got my claim reopened for me and I am waiting to receive a form I need to take to my doctor so I can resume getting some checks. Mind you, this will help greatly, but I am still getting a lot less than I make working. I was lent the money for this month's car payment which I will return once those checks start arriving. I am afraid it might not be in time for the holidays and in fact, I might almost be back at work. Still, I will gladly take them regardless of when they arrive. I am so appreciative to Ann Marie who made that important call for me. My attempts to call were futile, my letters both faxed and mailed went unanswered. I don't think I could have resolved this without her assistance.

I am slowly putting a few holiday decorations around. The tree will probably be put up this Saturday because Rob will be working the next two Saturdays. He was offered overtime and jumped at the opportunity. It is hard for me to see him go to work, work so hard while I cannot. He gets frustrated at what I try to do but believe me I don't get much done with the dizziness when I bend over and the gasping for breath once I start moving quickly. Well, I am going to go check the mailbox once again for the form which I wait to arrive. Once it's here I will run it to the doctor's office immediately, have her fill it in and personally mail it back to the agency. Today this is my top priority.

Saturday, November 28, 2009

All We are Saying is Give Peace a Chance

Rob and I are both peacelovers. We do not enjoy fighting and we enjoy even less, being verbally assaulted by people when we have no clue where they are coming from.
On Thanksgiving Rob did not call his mother. He knew she was having company and then going elsewhere for dessert. No one called us which was no big deal. On Friday evening we decided to get out of the house for about an hour after we accepted delivery of what was my grandmother's maple kitchen table. (It had belonged to my other grandma before her so it has extra special meaning to us.)
It needed some touch up stain so we ran out and got some. One of us got Dunkin Donuts. It was not the diabetic :(. We saw that between 8pm and 9 pm Rob's Mom had called here five times. She goes to bed at 9 and never left a message so he said it could wait until tomorrow. This morning my sister called and we were discussing my father's medicines and I got a beep. It was his mother again and I yelled up to him that he needed to call her back. She left a message for him in which she said she HAD to speak with him. He called her back and although I was sitting across the room I could hear her yelling in the phone. She said she had been trying to reach him for THREE days. Well, we were home all of Thanksgiving, have caller ID and voicemail and she didn't call that day. That left one hour on Friday in which we dared not answer. She said she was ready to call the police and have them check on us. My head was spinning by this time. Rob explained that he has a sick wife when she interrupted him and yelled "I have been hearing this for six months." Excuse me, for FIVE months I have been sick, trying desperately to get a diagnosis and improvement. I have had a few remissions from the bacteria attacking me while on antibiotics but please, do not act like I am a hypochondriac. She yelled and yelled while Rob gently tried to explain that as his wife I am his priority. She got even more furious and told him when he found a minute to call her and slammed the phone down in his ear. I was flabbergasted. What had this poor, caring guy done wrong? He had just spoken to her last Sunday, six days ago.
She has gone months without contacting us in the past. Rob dropped me off to see my Dad and ran some errands. She called his cell phone a few hours later and left a message. He wouldn't even listen to it, he just deleted it. This poor guy does not deserve this treatment. I do not need this kind of drama in my family or my home. I am not getting involved because of respect for Rob.

In addition to this, I learned yesterday that my aunt who is settling my grandmother's estate is not honoring my grandmother's wish for me to be the referring real estate agent. This is hurtful. My license is in New Jersey and while I could not list or sell the home, I could refer to an agent in Maryland who could. I would get a percentage of their commission which was what my grandmother wanted. My aunt worked very hard taking care of my grandmother. She is going through hard times herself and she is turning all this over to a lawyer to handle for her because it's easiest for her. I understand that and I would never say anything to upset my aunt. It just makes me sad that my grandmother's wishes won't be honored. I do love having her table here but it's bittersweet. I have some beautiful things but they were all received because someone "left" them to me.

I have had a rough day today. Some days I experience a lot of lightheadedness. This can be a side effect of my antibiotic but it can also be from the infection itself. I had hoped to be feeling better after two weeks but my cardiologist pointed out I have had this since July and it won't get better overnight. I still struggle at times for breath when I have to excert myself.

I want to have a gentle and peaceful atmosphere in my home. When Rob and I are here alone, we have it. Peace is a beautiful thing.

Friday, November 27, 2009


When my niece gets annoyed and/or frustrated she says "grrrrrrrrrrrrrrrrrrrrrr". Today that is just how I feel. I am so frustrated over what the temporary disability insurance did to me I could scream. I tried repeatedly to reach them by phone. After putting in a dozen pieces of information you reach a recording that says all representatives are busy, call back. So I will be waiting who knows how long to see what they say IF they answer me. In the meantime the holidays are approaching, bills are arriving and I have no income. We are a couple who depend on that second income. We can pay our mortgage and utilities on Rob's check but for many other things, we count on mine.

As though that were not enough I have had a few night sweats again. This is not a good sign. They are a sign of having the bacteria. I have been on the antibiotics for two weeks now and by now they should have stopped. I am so frustrated over this I want to cry. When I told a friend and my mother they both launched into lectures that I am stressing myself out and making my self sick. Okay, I agree that stress does interfere with your body healing but certainly, stress is NOT going to prevent antibiotics from working in your body. My mother has always wanted to blame me for any illnesses I had. I don't know what kind of psychological quirk that indicates but even when I received a lymphomoa diagnosis she tried to tell me I didn't take care of myself. PLEASE!! In my opinion it is CRUEL to blame a cancer patient for their illness. Unless they injected themselves with cancer cells, this is absurd.

Today I want to crawl in/under my bed, pull the covers up and just say "enough". I am a fighter but even a fighter needs support and a break every now and then. I have a rash on my legs and thighs that burns. My intestines are out of whack and I have so much riding on whether or not the antibiotics can knock out this infection. As my Dad used to say "If you can't say anything nice, don't say anything at all." My mother should have been listening.

Tuesday, November 24, 2009


Yesterday was a very busy day. I woke up at 5:30 and showered before I began the IV. Afterwards I wrapped a few presents and then went to the internist. I saw the associate of my regular doctor and she actually warmly hugged me when she saw me. They took lots of blood to check on the counts and see if they are coming down from the antibiotics. After leaving I came home and watched some tv before having take out for dinner and then at 6:15 p.m. I saw my cardiologist. I look in the mirror and think I look awful. I am pale but it's more than that. My cardiologist said I looked very good for someone with pericarditis. I guess that should have made me happy. Sunday everyone said I looked so sick and I agreed. I came home and had my second IV before going to bed.

This morning I got up early and began to search for the disability papers. I have not received a temporary disability check in three weeks. Amongst papers I found a notice stating they had ended this. My doctor had sent a form saying my TENTATIVE return to work date was in October and apparently, they lead them to terminate my claim. The really annoying part was that it was dated Nov. 4th and I only had the right to appeal in writing within ten days. Mind you, I was in the hospital Nov. 6-13. I arrived home around dinner time on the 14th and shortly later a nurse arrived and was here for over two hours at which time I went to bed. The next day when I woke up, my arm was in pain after having the line inserted the day before. I did not read/open mail. That would have been my last date to respond. I sat down and typed up an appeal , explaining all of this. I found a fax number on their website where forms could be faxed for submission and I faxed the letter of appeal there. Then I went to the post office and mailed the hard copy of it. I was home by 8 a.m. and waiting for the nurse to arrive and draw blood and change my dressing. After she left I found a phone number and called it. Four times I have been put through a lengthy que only to be cut off at the end telling me all representatives are busy and I must call back. I hope my letter gets a response. IF they do not reopen my claim I am in big trouble. That would mean NO disability from Oct. 25 until Jan. 4th or later. In the meantime I have prescriptions that I am filling, doctors that cost me copays etc. I had some (but not many) Christmas presents bought. I will not be able to buy more. I will need the credit card to purchase food and other expenses. IF the state of NJ has any sense, I am hoping they will accept and approve my appeal. Even if they do, I don't expect I would see anything for a few weeks. I am trying to remain calm about this. It's not easy.
The nurse also noticed I had a low grade fever. This really concerns me. If it remains or rises, I will have to contact my doctor. It might be a bug but it might mean the antibiotic is not working. If that's the case they will need to change it.
Time will tell.
Happy Thanksgiving to all.

Thursday, November 19, 2009

A Busy Day

Wednesday was a busy day for me. Once a week my nurse will be coming first thing in the morning to take blood. This blood test shows the levels of the drug in my body and whether it might be too much. Because the line is used to receive the drug, they must discard blood first drawn then draw several more tubes. When I saw how much blood came out, I felt ready to be transfused. This blood was quickly put into an iced container that Fed Ex came to pick up and transport overnight to the lab somewhere in the south. It's hard to understand all the insurance contracts with different providers. I am absolutely thrilled with the company they are using for the nursing/infusion. There are people who call me constantly with updates and the nurses are wonderful. I am very concerned about germs and they take every precaution. The line which comes out of my arm is basically a tube coming out of a hole. It must have a dressing change at least once a week in which the area is cleaned with alcohol. You can imagine how this burns. Then it gets covered with a tegaderm which is almost like a Saran wrap but sticks tightly to your skin. The portal hangs out and must be tucked up under something like a net stocking to keep it from being pulled.

Yesterday after the nurse left I had so many errands to run and also spent about an hour on the phone with the doctor's office. We had to discuss when I would be returning to work. Although financially returning now would be ideal, it just isn't possible. My morning infusion takes about two hours and so does the evening one. They are given twelve hours apart. This means the second one takes place from 8:30 p.m. until after ten. In addition, the nurse comes once a week (which is after nine a.m.) and on Fridays I get a delivery of the supplies, including these balls containing the antibiotic which must immediately be refrigerated. I will have to take pictures and post them. I am fascinated at how they make this so user friendly. When these treatments stop, the line must also be removed. It was decided I would return to work after the New Year. It made me sad in a way, but right now regaining my health has to be my top priority over everything else.
After the phone call I went to my mother's to pick up a bank deposit to make for her. She surprised me with fried tomatoes. How I love them. I used to sprinkle them with sugar but felt that an artificial sweetener would not be good so I had them plain and they were very good. She then gave me a small piece of cheesecake and I was on my way. After stopping at the bank drive thru I went to the grocery store. I just needed to spend about twenty-five dollars more and get my free turkey. I carefully added what I was getting and went to the check out. I'm sure people would have found it strange had they been watching me. I am not allowed to pick up more than ten pounds with my right arm with the PICC line in it. It's sore and I think five pounds would be difficult so I am picking up everything with my left arm. I proceed to the check out and the check out person asks me if I would like to redeem points on the roaster chicken I have picked up for dinner. Sure. She then checks me out and tells me that I am three dollars short of reaching the goal for the free turkey. Then I realize that the points I just redeemed messed me up. I pay for those things, and ask her to watch my cart so I can run back and grab something for three dollars. I quickly find a spice I need and run back. Have to wait in line behind two people but then pay for the spice and get my fifteen pound free turkey. Order is returned to my world. I think go out to the car with my plastic bags (I use recyclable cloth bags but I have forgotten them) and load this all into my trunk. I get home and again with my left arm carry it all in the house. It's not really that much stuff and only the turkey is heavy. I just get it all put away when I received two phone calls. One from my ex husband's cousin who I have not spoken with in years. The ex changed his phone number and somehow he tracked me down (didn't even know he knew my new last name) to ask me what had happened and if I had his new number. It was nice to speak with him. Just half an hour later a cousin I had seen at my grandmother's funeral called me. We chatted for a long time about various members of the family and he told me about a web site he is setting up. I may contribute stories about my great-grandmother.
My right arm is very sore. Although I tried to avoid using it, you just can't. It was a long and tiring day but a good one.
At Thanksgiving time I find myself thinking of all that I am thankful for. There is just SOOO much. Each and every day I am thankful for the gift of another day. I am grateful for another Thanksgiving. I am most grateful for the family and friends who show me the love. Even the small things are great when done in love.

Sunday, November 15, 2009

A Diagnosis

As most of you readers know I created a private journal and for those of you who read that you already know what I am about to share here.
Since July I have blogged about the constant sickness I have endured. When I think back it all began in July following a dental cleaning. It started out with a rash on my leg which I was given cream for. Thing is, the rash was warm to touch and quite large. Hindsight is 20/20. I was diagnosed shortly afterwards with pneumonia and given antibiotics which were appropriate for that ailment. This was confirmed by xray as well as my later diagnoses. Since July I have been fatigued and short of breath. About two weeks ago Tuesday my internist requested another CT scan with contrast to see what my lungs looked like since I was not getting better and now a low grade fever and nightsweats had been added to my ailments. The CT scan showed a new pneumonia and plural effusion. I made an appointment with a lung doctor I saw the following Friday. He told me to go to an ER and get admitted that I needed intravenous antibiotics and that it was not normal to have pnemonia and breathing issues so frequently that something else was going on. I went to the ER and was admitted. They did more xrays and blood work and saw that my white count (indicating infection) was up again. The lung doctor was called back in and this time they added an infection disease doctor, a wonderful woman Dr. D. She immediately began to research the past and explore possibilities. The lung doctors were also helpful in ordering more tests and suggesting things. They did an echo on my heart and the results were nothing special but at that time they called in my cardiologist of five years Dr. Jack. You have to love this man. Dr. D had talked about an ETT where they basically go down your throat and use a sonogram type device to see the heart much better. Since I have an artificial valve they felt this should be done although none of them felt the odds were great that this was the problem. Dr. Jack said since several of them had thought this was something that should be done and I had the artificial valve he suggested we do it. The following morning I was taken for the test and although another doctor performed it, Dr. Jack was there and observing for himself. They found what the problem was. Irony of ironies, it was NOT the artificial valve that was infected but another valve, the mitral valve. Yes clearly there was something growing on it. That had been spilling into my blood and lungs causing problems. The few weeks I was on antibiotics got me a bit better until the last four weeks when things became even worse. I was relieved, yet scared, to know the diagnosis. What this meant was the following morning I had to have a PICC line inserted as I would need intravenous antibiotics for the next six weeks. I was given options. I could go to the hospital twice a day to their infusion clinic (visits had to be twelve hours apart) and spend a few hours there each visit OR I could have some nurses come to my house and teach me how to care for the line and do the infusions myself. Moment of panic set in but then I remembered that when my son was on chemo I had cared for his line, flushed it and this would be similar. I had the nurse come and the supplies were delivered shortly after I arrived home Friday in the afternoon with my new line in my arm. A hole in one's arm causes quite a bit of soreness. Kathy, the nurse showed me how, sat with me for the hour and a half it took for the infusion, showed me how to do the final flushes and close the line back up. Saturday and today I did all the treatments on my own, although a nurse did come to change the dressing on Saturday. That I am not permitted to do.
I am hoping/praying/meditating that these antibiotics will take care of this.
If not, I will have some serious decisions to make. Periocarditis is not something one can ignore. It's too soon to be feeling better but I can breathe easier. The fluid that was in my lung is gone now. I can walk upstairs without nearly passing out. I feel I am on the road to recovery. At times I become overwhelmed thinking about my grandmother who is no longer here to offer me her support and unconditional love. The thoughts of what could be are a dark place I don't want to visit. I've had open heart surgery and a valve replacement.
Positive vibes, caring thoughts and prayers are welcome. I will keep you updated as I can. I have to go back to the hospital tomorrow for bloodwork and will need that twice a week for the next six weeks.
Mostly, I am so grateful that the team of doctors found what was wrong and hopefully in time for the antibiotics to work and fix this problem once and for all. Either way I know this: I am one tough cookie. I will do whatever it takes because I love life and I'm not going to leave it without one hell of a fight. That you can count on.

Monday, October 26, 2009


I got an authorization number today from my health insurance company for the CT scan with contrast. It looked so sketchy stating it was no guarantee of payment. Sheesh. I have my pulmonary lung fuction scheduled for Thursday.
After reviewing these two tests, the pulmonologist will decide what comes next. I persist in having the low grade fevers and the drenching sweats at night. I wake up freezing and soaked. Nothing is new. I am still lethargic and often when I try to catch a nap, the phone will ring. Usually something that I don't want to deal with. Going to go to bed soon.

Wednesday, October 21, 2009

There will be an entry in my private blog which I don't feel comfortable posting here. IF you wish to be added to that blog please click on the dog link and email me.

Saturday, October 17, 2009

BRRRRR It's Cold!!!

Yesterday I ran out to get milk and the minute my ankles hit the chilly air I knew the temperature had dropped quite a bit. It snowed (although I think it was rather light) in Northern Jersey. It snowed in New York, although not in Albany where my sister is. It rained on and off all day yesterday and there are some sprinkles today.

My grandmother's funeral is Monday. We are heading out at 7 a.m. to go about two hundred miles. I find it a bit nerve wracking to have to wait so many days before the funeral but there were people coming from all over and the only other time available was Saturday at 10 a.m. That's early when people are coming from two hundred miles away. With my Dad in his present condition, we are going to get home quickly. He is angry that he is not being taken but that would be impossible. My mother had to get two different nurses and is having their friends, a couple, stay with him throughout the day as well. My father seemed unable to say anything yesterday that we could understand. It's frustrating for both of us.

I woke up suddenly at 5 a.m. and the asthma was kicking in. I grabbed the inhaler then turned on the shower and between the two it got quickly under control. It's hard not to feel a moment of panic now when I have trouble breathing. I instantly fear a trip to the ER, or worse, another hospitalization. I got my disability papers and I will get less this time because I received disability back in February for eight weeks. They base it on my yearly earnings and so far I am down seven thousand from last year. Getting sick is expensive. I really can't afford it.

Rob is going to be cooking tonight. He makes a recipe we got from Wegman's Menu magazine. It's sausage (using a low fat version) and peppers. It's really delicious and you have it over pasta. I use whole wheat now. Since I have been up since 5 a.m. I may need a tiny nap soon so that I can be awake and alert to enjoy my dinner. Hope you are all having a wonderful weekend and staying warm. Yesterday I spoke with my friend who is in Ft. Myers, Florida. She said it was 91. Is there anywhere that has a steady temp of mid 70s? That's my ideal.

Thursday, October 15, 2009

She's Gone to a Better Place

Gang, my son Tom and I

Yesterday (Wednesday) at about 3:30 p.m. my grandmother left us. My aunt and cousin were by her side and said it was so gentle and peaceful a passing. She smiled, let out a breath and gently went to join her husband, who she said was waiting at her beside for days. She commented that he looked more handsome than ever. They were married nearly sixty years and in all that time I saw them argue twice.

Clara Virginia Wolfe Cosgrave July 15, 1912-Oct. 14, 1009

5 yrs ago (I have lost weight since this photo)

When I think of my grandmother (my older brother didn't say grandmother and he nicknamed her "Gang" which stuck for all nine of her grandchildren), I think of two words: unconditional love. There is nothing else more that a child needs than unconditonal love. My father was in the Navy and he traveled a lot. Many of my younger years were lived in her house, which by today's standards would be considered a cottage. It had two bedrooms. They bought the house brand new. At one point they put a small addition on it changing the kitchen to a dining room and adding on another kitchen, which was over the garage. The tiny lot had a steep hill and the yard was fenced in to keep us safe. My grandfather was a police sergeant. He was one of the first motorcyle police on the white Harleys for Montgomery County, Maryland. At that time, policemen didn't make a lot of money but whatever they had was shared and stretched and all were welcome in their home. There were eight children in my grandmother's family and often for Christmas she would prepare a huge meal and they would wander in throughout the day. She was a wonderful cook and no matter what she had, it was turned into something delicious. Gang was so proud of her two daughters which were twelve years apart in age. When we lived there at one point, my brother and I slept in the dining room and my Aunt Judy was a teenager. How I idolized her and her records. She was a huge Elvis fan. I have only wonderful memories associated with my grandparents and their home.

My grandmother lived to be 97 years old. That is a full life and she had a wonderful life. She was able to remain in her home until the very end, a promise made and kept by my Aunt Judy. It was a huge sacrifice for her but she made it.

The final plans haven't been made but we will be going to a funeral service and burial only in Frederick. All Gang's family is buried there and she will be laid to rest under a double heart headstone with her Les.

I feel so very blessed to have had her for each and every day of my life. I was born one week early of her 42nd birthday and I was her first granddaughter. She said that was the best birthday present she ever got. Gang was there for me when I came home from the hospital after my spleen was removed, was there for some of my radiation treatments, was there to celebrate my son's birth, was there to encourage my son with his chemo treatments and was there when I had my open heart surgery. There was not a time I needed her that she was not there. Of all the grandmothers I might have had, she was the perfect one for me. No matter how much I grieve her loss, it will never diminish what she left me.

I am a better person for having been a part of her life. Isn't that a wonderful legacy?

Tuesday, October 13, 2009

Autumn Has Arrived

Yesterday I decided to run out to the local grocery store for a few items. I wore my leather clogs and once my feet hit the outside air a chill swept through my entire body. I had a jeans jacket on over a sweater but even with the heat on in the car, I was not warm. I quickly moved up and down the aisles and got back home so I could put on the thickest, warmest socks I could find. What a great feeling to have your cold feet warmed up. It is really cool and not very sunny today.

My mouth has improved greatly which has brightened my outlook. I feel shakey and it is difficult to write with a pen. I have to assume that is steroid related. I am still using two inhalers that contain steroids but I finally ended the pills.
Last evening I received a call from my cardiologist office. I had an appointment and with all else going on I had forgotten. They rescheduled for next month and were very understanding. I need to call the dentist and see if he can squeeze me in. I am a few months overdue and now want to be certain that my mouth is in good order. I get my teeth cleaned three times a year per doctor's orders.
Last night I had a nice meal ready when Rob got home. Haven't done that in a very long time. Usually he is home two hours earlier than I am. He worked an hour overtime which gave me longer to prepare. I made a delicious mac and cheese with smoked sausage in it. I make it the old fashioned way, using a white sauce that I make. Yes, I know, not very healthy but very tasty.
I made an extra and he delivered it to my parents. Tonight I am thinking I might make chicken marsala. Haven't had that in a long time. I really enjoy cooking when I have time. When I am working that usually means weekends only. I am hoping I will be going back to work rested this time. I am still tired, still having some restless nights which sometimes include waking up in a sweat. I haven't slept through the night in many months. I hate waking up so tired. It feels like I drag through the days like this. I keep telling myself to be patient and to just take it easy and let my body recover. I have never been good with delayed gratification. You would think by now, with all the times I have been forced to have patience, I would be better at this.
I am thinking of treating myself to a new down comforter. The Company Store is having a sale and there's are the best. My old one is worn and my darling dog grabbed the end with his teeth. Although I sewed it shut again there was a dusting of feather/snow everywhere and that part seems empty. There are few feelings like slipping under a down comforter on a cold winter evening. They are so light on your body but keep you so toasty warm.

Sunday, October 11, 2009

Serenity Now

I am a huge fan of Seinfeld and if you are too you will get the title.
This weekend my sister came into town and I was so excited she was coming. Unfortunately, my brother's wife also decided to pick this weekend to stay at my mother's. The real rub is that SHE never called my mother, she had my brother TELL my mother she would be staying there. My mother immediately told my brother "this is NOT a good time for her to come." My brother said he passed that message on but she still came. (She has not spoken to my mother in months) My brother couldn't give my mother any details. My mother, who has been dealing with my father and my recent illness and her mother being in hospice care is on maximum overload. Said sister-in-law did not give my mother any agenda and showed up Friday night to sleep there. My mother who never has a bad or confrontational word for anyone has cried more tears over her frustration in dealing with this. She is very frustrated with my brother for allowing his wife to do this. We have been waiting daily to hear that my grandmother has gone. My sister who always looks forward to the time with my parents, and time with me has had to endure this visit as well. My sister had surgery about a month ago and is not 100% herself. You have to wonder why someone would impose themself on people under stress. I guess they just want their own way and don't care how they inconvenience others.

My mouth sores have sufficiently healed so that I am down to two remaining. Yesterday I was actually able to eat a meal! I had made some London broil and was able to slice it paper thin and have it with some gravy. It was pure heaven. I also enjoyed a few crackers with cream cheese and olives. The most troublesome of the sores is on the top tip of my tongue. It was the first and will be the last to heal I think. The thrush has cleared up nicely. My wheezing is infrequent now and I am deffinitely getting stronger...finally. I am far from the normal me. My legs still feel weak. I have lost over ten pounds in the past few weeks. I am still weaning off the steroids and have boughts of emotional or moodiness though they quickly pass. I am hoping my white count is dropping. I have not had a lot of sleep the past two nights. I have been up since 5 a.m. when a neighbor's car alarm went off. Yesterday I was up at 6 a.m. and that was the first day since I came home from the hospital that I didn't have a nap all day. The phone rang at least twenty times yesterday.
My beautiful Fall is here. I am so happy so have the brisk morning air. We have some Halloween decorations out. Not decorating like I used to. I live in a development and will have about one hundred trick or treaters. Most start about 4 p.m. when I am still at work. I already have treats purchased and waiting for my little goblins. I must say that these children are so polite it is a joy to see them.
Lately I have been keenly aware of manners and the lack thereof. Certain visitors to my mother's house are really annoying me. They don't call first, they just show up. My father is on a regminented schedule. They come at his mealtimes (or ours) and stare while you are trying to eat dinner which often then gets abruptly halted. Do people possibly think this can be appreciated? I made THREE attempts to visit with my Dad when people showed up, unexpectedly and stayed. I would never a. drop in on someone or their family without the courtesy of a phone call or b. drop in empty handed at meal time (several of his visitors do this as well.) Each time I left, not wanting to be near people I don't know are not sick. These are not young kids either. In fact, several are senior citizens. Sorry I will now put my soapbox away. I just hate illmannered people.

Thursday, October 08, 2009

Coughing but Better

Remember Sesame Street? Today's show is brought to you by the letter C as in cough. I wish I could stop coughing. In the morning I use the Advair inhaler and then as needed I use the Proventil. Both seem to be giving me heart palpitations which wore masked by the steroids. As I reduce them, the palpitations are more present. Overall I am feeling a bit stronger each day now. Now I want to get my focus over to the good stuff of the Fall.
This summer was a huge disappointment to me. It's as though it was not. I never had one day that I truly felt well. I did not go out to eat at the shore, walk on the beach, any of the things I usually do. Since working my present job I have not had ONE vacation day. Each day off has been used for illness (except for two days where I rushed to be with my Dad after one of his strokes.) I am so hoping for a mini vacation but not sure when/if that will happen. I am deciding that I must have some quality time/relaxing hour respites. This weekend my sister is coming. Haven't seen her in a month. She is always a huge help to my parents. We fit time in to visit and those are rare and treasured times. This weekend is a holiday weekend for her so she will have an extra day here. I am determined to find a few hours where we get out for a bite to eat and some sisterly chatting.

Wednesday, October 07, 2009

A brighter day

I am finally starting to get better. The sores in my mother have lessened. I still have some. The ones that are most problematic are in my throat now. My tongue is finally so that I can eat. There is some discomfort but after losing eight pounds over the past two weeks I can finally eat something and it doesn't all taste like chalk. Woohoo.
I am still very tired. My blood tests show my white count is still quite elevated. I am to be resting the next few weeks. I am being weaned off the high doses of steroids that were first iv, then oral. I am continuing to use two steroid inhalers and will have to for a while. For the most part I am not wheezing but there are times where I still am. The doctor is disappointed in that. When I lay in bed at night it;s the worst. The inhalers help but they cause bad tachycardia for me which is especailly troublesome when trying to sleep. Do I ever sleep. I have never in my life slept this much. If I sit still for ten minutes I nod off. I nap throughout the day. Twice I have gone to the grocery store in the past few days. It is very difficult to have the energy to get a dozen or so items. When I am home and put them away I must take a nap. I am not used to this. Today for the first time in nearly a month I was able to go visit with my Dad. His speech and confusion seems even worse. At least I got to spend about an hour with him before having to come home. Not sure how long this huge energy issue will last. I am hoping that when I have my next blood work done on the 19th that the white count will be significantly reduced and my energy returned. Coming off the steroids makes me feel strange at times. I have gotten highly agitated over minor things which is not like me at all.
I am going to see what's on TV and then call it an early night, as I usually do.
My Fall is here and I am loving the cool evening breezes. Sitting here with the window open and soaking it up.

Saturday, October 03, 2009

May I have some cheese for my whine?

I have been sick over two weeks now. I am tired of being sick and tired and mainly of these God awful sores all over my tongue and down my throat. Nothing is helping them. I am also weening off the steroids. I feel like something which is not me. I am brought to mind over and over all the sufferings of the many friends I have and sometimes it brings me to tears.

My grandmother is hanging on in her home with my aunt caring for her. The hospice people say she will not let go, she is fighting every second. She is 97 and I would think she would be happy to think that rest will come and peace. I feel so badly for my aunt who is not well herself and trying to take care of someone who is medicated and argumentative. It almost makes me glad that I will probably not live into my elder years.

I am desperately searching for something to eat. Firstly, everything takes chalky and awful. Secondly even yogurt hurts to eat. I had burns in my mouth from radiation and the doctor had me crush aspirins in applesauce to coat my throat so I could eat. If I get desperate enough perhaps I will try that. I pray I never have to take such high dose steroids again but it seems likely. I am going for a huge bloodwork up on Monday. My white count needs to come down significantly. I'm usually an optomistic person and a fighter but right now I feel so weak physically it's hard to find that grit that I can usually grasp onto. Maybe tomorrow.

Sunday, September 27, 2009

Posting For Nelle

Most of you know Nelle was sick last week. Early Monday morning she made a trip to the E.R. with respiratory distress. She was admitted with bad bronchitis and breathing problems. She is still hospitalized but hoping to come home in the next day or two.
She is now suffering from 'Internet Withdrawal' and will be back online ASAP.

(Posted by Rob, her husband)

Sunday, September 20, 2009

Another Round with Illness

Last Monday I left work with a terrible sore throat. It felt like it had razor blades in it. I woke up Tuesday and decided I could not go to my job and speak all day on the phone with my throat hurting so badly I could not swallow at all. I had another ordeal to deal with. The IRS had sent a letter saying that my 2008 taxes were never paid. I had ignored that first letter because I KNEW they had been paid. Well when I received a REGISTERED letter from them Monday evening I learned otherwise. Thankfully I was able to call them on Tuesday. What I learned was that my accountant had sent me TWO sets of vouchers (which get submitted with payment.) One was for the full amount to be paid now and the other was a set to PREPAY for 2009 the amount divided by four. I wrongly assumed that the four vouchers were the choice of making several payments instead of one big payment. They told me that they would put a hold on the account. They were going to levy us. I told her that I would get the money to them ASAP. Thankfully I had an emergency account that I could take the money from and send it. Here is what I consider to be the ridiculous part though. Once I explained and they realized what the problem was they said the money could NOT be moved from one account (2009) to 2008. I explained we will not have this problem and the money would not be due then as my husband was out of work half the year. "Sorry" she said "but you did send the payments with the vouchers you did and wrote the voucher numbers on the checks as well."
I called the accountant and at first I was annoyed. I reread the letter accompanying the vouchers and there was a reference to the vouchers but for someone like me who had no idea, I don't believe they explained it adequately.
He offered to try to assist me but I told him since I had been threatend I was not comfortable doing anything other than complying. A few days later the logic of the thing hit me. I should have known money for last year would be 2008 NOT 2009. So next year I should be receiving a nice tax refund. Unfortunately, if I run into an emergency that won't help me.
But I digress..........getting back to work. On Wednesday I went in and managed to blow my nose several hundred times and annoy all my coworkers that I was there. They all know the strictness of our attendance policy. The one girl who was first sick (and was there each day for five days coughing and sneezing and spreading germs) is a single mother. She cannot afford to lose her job for too many call outs and our boss told her if she left sick it would count against her.
The boss got sick first. He came to my desk several times and then by Tuesday I was pretty much sick. Somehow I made it through Wednesday but Thursday I woke up feeling rather dizzy. I had breakfast, went to work and seemed okay until I stook up to walk somewhere. I slumped to the floor, feelilng I was passing out. I came into the meeting room and my boss and coworkers were concerned. I was wheezing when breating, my nail beds were purple and my hands were shaking. They asked if they could call 911 for me. I begged them not to. I got my doctor on the phone who told me to come right in. She was upset when she saw me saying I should have come in sooner. My chest sounded like the right lung had pneumonia again. She gave me meds for pneumonia and sent me to the hospital. The hospital said I did not have pneumonia. She put me out of work Friday. I am still running a fever, coughing uncontrollably and worried about not going to work. I wake up at night, soaked with sweat. I am just never catching up. Because of the attendance policy so many sick people are at work. This causes other people with health issues, such as myself a major problem.
I have been awake an hour. I need a snack and more sleep. I am hoping to get better. All summer I didn't have one day for the beach. All my work times goes to sick time.

Saturday, September 12, 2009

Rain slowly clearing

We will be leaving shortly to go have dinner at my mother's. My sister has invited us, my brother who lives next door and his wife. I have made a few simple things to take with us. This morning I suddenly realized that I had not had my INR tested in nearly seven weeks. I am supposed to do this every four weeks and be rigid about it. I messed up. Went to the hospital this morning and got that done. There were police officers all over that area checking to see if people were on cell phones. I have a bluetooth device for when I am in the car and need to be talking on the phone, which I don't do often. I was pulled over and asked if I was on the phone. I told the officer I was not and offered to show him my cell phone was in my purse which was unopened. He told me it wasn't necessary and sent me on my way. I then mailed bills and went to the mall. I used to love Macy's. Now they have coupons that increasingly limit what they will cover. I waited in line ten minutes only to be told that it would not cover a shirt I was buying because it was some kind of special buy. How would I know this? So...I went back and found other things that would be covered and stood in line again. I had forgotten to bring my card so each purchase required fishing out my driver's license and feeding my social security number into an electronic pad. I had a gift card that I was finally able to use and got some good deals but the lines were not easy. People tend to get testy in these situations.

I wanted to put a link here to the most wonderful blog where my friend (and artist) Judith HeartSong published pictures. THE ART OF TEA is a blog showing the clever and creative minds of several artists. Some of them defy description, at least by me. We own several teapots and Rob loves to use a diffuser and make a strong pot of tea. I also like tea but do not feel the decaffeinated ones are as good.

It is wonderful to have another weekend. They are my job now. That is when I can take a deep sigh and relax. During the week life is much too hectic. I hope all of you who are reading this can take a deep breath as well and enjoy some ME time. We all need that. Have I told you lately I appreciate you? If you take time to come here and share my life, I appreciate that time and YOU.

Monday, September 07, 2009

A Fabulous Day

Yesterday Rob and I had a simply marvelous day. It began with pulling our Halloween stuff out of the attic. We have two containers full. Each year we usually add one thing and often they are things gifted to us. For my birthday in July my sister-in-law Stephanie gifted me a black cat decoration. Rob loves all cats and we use them a lot for Halloween. After we did that Rob took down and washed the living room miniblinds. We have found using dish detergent in the tub works best. I took down my little valances which I love and saw that the sun has ruined them. I need to find replacements. That lead us to go to Bed, Bath and Beyond and they had nothing I wanted but we ran into a former next door neighbor and her daughter. This was a two year old when we met her and I was shocked at how lovely and tall she is. We then went to the mall and had a delicous lunch at Ruby Tuesdays. I had a glass of sangria that was delicious. We picked up some soaps and candles then I called my brother who lives about ten minutes away. His wife was seriously injured in a car accident about a month ago. She is very sweet and this has been so hard on her. She has had to have artificial and human bone put into the leg. She still cannot put any weight on the leg and is in a wheelchair. She has to sleep in a hospital bed and isn't allowed to go in public because she cannot afford to pick up any germs. We had a nice visit and I took her a fall candle. On the way home we swung by the Coach Factory outlet. I had wanted to go there but heard it was still very expensive. I was talking with a coworker on Friday who told me she picked up a pocketbook for $80.00. I was really surprised because in the mall they are at least $300.00.
We pulled up and there was a LINE of people waiting to get into the store. They said it was due to fire hazard safety. I waited about ten minutes and found a beautiful handbag with all the discounts I think it was $120.00 but it is all leather. It is beautiful. I have never had a Coach bag and always thought I would like to own one. I decided to splurge on myself. I rationalized this because I had used all my birthday money to pay bills. Now I am pretty much caught up.
We came home and just relaxed. That is something I don't get to do very often.
I am going to finish putting out some Halloween decorations today. Hoping for another relaxing and enjoyable day. We wanted to have my mother take Dad to the beach....there are areas on the boardwalk you can sit and it is wheelchair accessible. We can take his aid along as it is only about a 40 minute ride. My mother thinks it would be too much trouble. She is also embarassed about how my father acts. That really annoyed me. I told her people can see he has had several strokes and anyone who would be bothered by that does not concern me. She has always been so concerned about appearances. I don't know if her generation was raised to be this way. Many of my friends mothers are the same way. When my father gets upset he curses repeatedly. This doesn't happen that often but she just gets beside herself. Another thing I have never understood, these are just words why does she percieve them as being so powerful? There are other words I detest but they are usally words used to insult, hurt or show prejudice to people. A word used to express anger or frustration does not upset me. Anyway, hoping for another good day. I have really enjoyed this weekend thus far and now for the bonus day.

Saturday, September 05, 2009

private journal

I am going to be making a private journal with entries that will be shared with friends as opposed to a public journal. I am going to be setting that up today and all readers I currently have their emails for will be automatically invited. I do not have everyone's emails if you would like to be added to that list just send me an email to: and if I know you, you will be added. The explanation of why I am doing this will be the first entry.
If I have neglected to send you an invite and you are a regular reader it is only because I don't have your email addy so please send it. I am not going to stop writing here, just things that are more private will be in the other journal.
Have a great Labor Day Weekend!!!!

Thursday, September 03, 2009

September 3rd and 4th

Today is September 3rd. The first man I fell (really fell) in love with, passed away about seven years ago, before Rob and I were even married. We had met as teens and as I grew up a bit I could see things that were going to be real problems for us. I broke up with him (he did not make it easy) and shortly afterwards married my first husband. He begged me not to marry him, telling me that he was the wrong person for me and in hindsight, he was right. I spent many years wondering how things might have been. He found a woman who was right for him and had a good life with her and their two sons. Sadly, he was a heavy smoker from an early age and this lead to him having lung cancer. While he battled it courageously from those I talked to, it was probably diagnosed late. I think of him throughout the year but especially on September 3rd. This would have been his 58th birthday.
Tomorrow is the anniversary of my son's diagnosis with leukemia. It was the day after Labor Day that year. I will never forget seeing the school buses (the hospital was located across the street from a Catholic school). I was keenly aware that my son might not start school with them. Later that morning we learned he had leukemia and that he needed immediate hospitalization to begin an intensive chemo regimen. What was not anticipated was the reaction his body would have and for the next four and a half months we practically lived in the hospital. The few times they sent him home did not last and within a day or so we would be back. After the second month I came to feel that the pediatric ward (adolescent wing) was my home away from home. The other mothers and nurses were my support team. Many friends shied away, and the ones who tried to keep in touch, simply didn't understand. He never was able to go to school that entire year. He did get "passes" from his doctor to attend a bonfire and such activities. I will never forget driving him there and parking where he couldn't see me...sitting there and crying for joy that he could have a few hours to be "normal". Every year since then, when I see the school buses picking up the kids that first day, it is very difficult. This is the first year that I did not break down and cry. My son is still with me. I am so very fortunate. He will never be the person he was before. He has an overwhelming sensitivity to the plights of others which sets him apart from most people. He is keenly aware that he is different and thinks people look at him differently. There are no outward signs except for his scar where his Hickman line was removed. Most of the scars are deeply hidden. He can talk to me about it, knowing I went through my own battle. I know this. My world forever changed that day. Facing the possible mortality of your child is overwhelming. I was luckier than many because I still have my son. I will always be keenly aware though that none of us have a guarantee. I want to go back and be the naive young woman who never had to think of those things. A part of my innocence left that day. I mourn that each year around Labor Day. It was better this year though, for the first time.

Monday, August 31, 2009

Weekend Wrap Up

I really shouldn't take the time to do a quick post but I shall. I'm just enough of a risk taker to believe I will then get ready in record time for my periodontist visit this morning. Deep cleanings there are like well, torture with a slight numbing agent on my gums. I have had gum issues previously and I have to be vigilent about keeping germs out of there as it can cause big valve problems for me. I also have to take antibiotics to have the procedure done as a precaution. Not a big deal anymore but just another thing to remember.
The good news is............
1. I have a paid day off of work making it a four day work week and since next Monday is Labor Day that will make two consecutive four day work weeks. woohoo!
2. Today is my seventh anniversary with Rob.
Yes, seven years ago I married the unique person known as Rob. I could never describe him and do him justice. I might embarass him because he is very manly with other guys and I see a soft side that I'm sure they never will. We have been through a LOT together. We were only married two years when he had to go through the heart surgery with me. That was a rough one. They once called him at two in the morning and he nearly had a heart attack. His goatee starting getting gray hairs that day. I have given him a lot of gray hairs.
In each marriage there is always someone who gives more. In my first marriage it was me. I gave and gave and got little in return. With Rob, we try very hard to keep it even. We share housework etc. Due to my health issues, Rob has had to give a lot more than any husband should have to.
Rob and I have shared a lot of sadness as well as laughter. Right now he is giving me daily support as I am seeing my grandmother and father slip away.
This weekend my father was especially troubled. He seemed to be in pain and I could not figure out what was wrong. His communication skills are worsening. I ground up a tylenol for him and put it in milk. After a few minutes he seemed better. I cared for him Saturday and Sunday so my mother could get out a few hours each day. It is a difficult situation to care for someone who is so physically helpless and cannot communicate either. Ijust do the best I can when I am there and constantly reassure my mother that she is doing the best she can and noone can ask more of her.
Well time to get ready. Later this afternoon I go for my mammogram. I am overdue on that. With my history, shame on me but at least I am doing it now.
Fall is coming. How I love the Fall. The beauty of Fall, the fun of Halloween, and the spirit of Thanksgiving, all setting the scene for the holidays around the corner, just lighten my spirits.

Saturday, August 29, 2009

Another Belated Birthday Wish!

Note to self: put birthdays on calendar for next year
Happy Belated Birthday to Ronni!
Ronni has had a difficult year with her second bone marrow transplant. The past month seems to find her getting back to a somewhat normal life...finally.
Ronni I wish you a wonderful year ahead filled with all the things you most love, time with your children, time with Maddie and time with your sister and many friends. Hopefully this time next year will find you playing tennis again.
Wishing all the best today and always!!!

Off to babysit Dad today so Mom can have some time off. It is really getting to her having the caretakers showing up late, sometimes not at all. She is the primary caregiver 24/7 to someone who has a childish personality. She is 77 and finding it hard to cope. Dad, who never allowed fowl language in our home curses of the few things he can say clearly. It's driving her up the wall. In the meantime her mother is on a steady decline two hundred miles away. Tough times for her.

Wednesday, August 26, 2009

Belated Birthday Greetings to Susan

One of my readers, who has become a friend through Facebook as well had a birthday on Sunday. Real friends never ask your age but by the pics I could see we live in the same neighborhood.
Susan is a joyful, vibrant and compassionate person who has had her share of medical battles this past year but still knows how to get the most out of each day. I wanted to give her a "shout out" to say once more
(not using the G____mother word cause you're just too young! hehe)
Hope your day was as special as you.

Monday, August 24, 2009

Restful Weekend

I am a bit in a rush this morning. I have showered but my hair still needs to be blown dry and the makeup which is taking longer and longer these days still must be applied for the mental health of those who work around me.
I really kicked back on Saturday. We did pick up new wooden blinds for the bedroom which Rob hung. Took down the curtains and those got taken to the cleaners. (Which means when I get them back I will air them out before rehanging.) Room looks good. I actually took three naps on Saturday. I was promptly woken up by the phone each time. One call was from our local newspaper which I have asked repeatedly to stop calling. I can read it online and I do not wish to have to recycle the paper anymore. It's a major inconvenience. Sorry Asbuy Park Press but you should privatize your site and charge for access. I might pay.
My fluid level has improved due to a RIGID diet on my part. It's bland and unappealing but it is working. I still have the fluid in my lung but other than wheezing when I lay down it's not a major ordeal.
My Dad looked really bad yesterday. I won't go into the details but he is on a steady decline. Sometimes it hits me really hard as it did last night. Other times it doesn't. He screams out in pain from his legs hurting. It's so stressful to see. I am not sure how much longer my mother will be able to have him home if he continues to decline. My mother always hated cursing. He curses nonstop now and that seems to upset her more than anything. It's like the ONLY words he correctly pronounces are the ones that were always forbidden in our house. While there is something that amuses me about this, it drives poor Mom insane. Another work week has arrived. Time to grab some breakfast and finish preparing for the day ahead. Hope you all have a wonderful week and remember to appreciate all the things you are able to do. My sister-in-law Leslie is better but looking at a minimum of a four month recovery at home. There are so many people who are deprived of the simple things we take for granted, such as walking. I am going to try to find time to go visit her soon. Sometimes someone giving their time to visit means more than anything else.

Tuesday, August 18, 2009

A Reduction

Finally, yesterday, Monday, the fluid began to improve. I could get my feet into regular shoes. It took four days of lasix for this to happen. I am remaining on it for awhile. At least my calves are not throbbing any longer and my feet are not numb or feeling as though bees have stung them.

I am in a funk. I needed to call the doctor today but did not have time at work to do it. Computer issues which have persisted are adding stress to my days and at this point the last thing I need is more stress. I will have to call the doctor tomorrow to get word on other tests I have had. If I am truly honest, I am sick of illness, doctors and tests. My son came over Sunday and began to lecture me. I know he is well meaning but I just need a long vacation which is not a possibility. Not if I want to keep my job. My August day off is spoken for with several doctor visits being crammed into the one day. Having my mammogram which is nine months overdue. In September I have three doctor visits scheduled in the evening. I will be lucky if I can make it there from work in time. I am not my usual optomistic, perky self. There are lots of things I could go into but not in a public blog. I am thinking of making a private blog. Not that I really have time to blog mind you............

Sunday, August 16, 2009

Frustration thy name is fluid

Last week when the fluid issue began I was not all that concerned. When it happened before I took lasix (then potassium) and problem solved. This time it is not working. When I was in the hospital post heart surgery I had THIRTY POUNDS of fluid on me. Hadn't eaten in ten days so it might have been more. Anyhoo I had a line in my neck which they shot the lasix into intravenously. Within ten minutes and several gallons of fluid leaving I was okay. For that week I had to have the lasix daily. Eventually this resolved. With the oral medication this does not seem to be resolving. At this point the only shoes my feet will fit into are flip flops. Cannot go to work like this. I am not eating any salt and I have lowered my fluid intact. I did go to a lab 7 a.m. Friday to have some blood tests made. I will contact the doctor Tuesday for results. I am miserable. My feet alternate between hurting and going numb. Going up and down my stairs (which I did four times this morning already) is very hard on my feet. Yesterday I went and sat with my father for four hours so my mother could go out. The entire time my feet were propped up on their sofa. When my mother came home I came immediately home. I have done nothing this weekend and I have a dirty laundry hamper filled to prove it. I am beyond frustrated. I keep fixating on what is wrong and how I will be able to go to work and get this resolved. I keep thinking that I left my mother-in-law two voicemails telling her I was upset some two and a half weeks ago and she hasn't even bothered to call. Haven't spoken to her in FIVE weeks now since I was first diagnosed with pnemonia. I know that I have to let that go but right now I am not feeling well and it's harder to do. I know I could go to the ER and they would tell me to contact my doctor. Going to go lay back down in bed. I have been up three hours and Rob is up now and can take care of the animals.
Usually I am good at coping with illness but I am sleep deprived and miserable.

Thursday, August 13, 2009

It's Thursday.......

I know I haven't bee blogging like I did. For one thing, I feel so tired and things are hectic when I get home. To be honest, I am having some real physical issues right now. I am experiencing breathlessness. I get out of breath walking across a room these days. Since this was one of the things that led to the pneumonia I left work two hours early and went back to the doctor today. (I lucked out because if calls are slow coming in they OFFER us time off unpaid, this is the only way I am allowed to do this barring an emergency.) Got to the doctor's and she could see I was full of fluid. I don't think you can imagine how full. My feet are so swollen they were bulging out of my summer sandals. My legs are hard like bricks swollen to the max. They have been like this and painful for days. The only relief is laying on a bed with them elevated and not on a floor.
I kind of knew what she was going to say. Sometimes I wish I could be ignorant regarding these matters and be able to delude myself. I have never had that ability. I am a realist. When I had my heart surgery I went into kidney failure for over forty-eight hours. If it persisted another day I was going to need dialysis. I was lucky enough to have my kidneys start to work on their own again. By this time I had a kidney specialist on my case and he warned me that I might have problems later. Nah. Well, the fluid is either an indication of a kidney problem (will be tested to rule that out) or the very beginning of another problem. Something concerning the heart. That's all I want to say for now.
Right now with my grandmother under hospice care, my father severely disabled and my mother on the verge of losing it, I have to put the importance of this on the back burner. I will have tests done and try whatever medication will fill the bill but I can't let it overwhelm me.
On really bad days I have to remind myself that I won a battle for my life over thirty years ago. Each day since then has been a gift. I have to live it one day at a time and make the most of each day.
My biggest concerns are not for me but for those who count on me.

Sunday, August 09, 2009

The weekend draws to an end.............

There were some great moments to this weekend. My niece who I did not get to see emailed me for the first time. Only a few lines but it brought joy to my heart to know she is thinking of me, as I do so often of her. Last night my sister made dinner (she is at my parents for another four day weekend) and invited us over. Her friend, a therapist, was also a dinner guest. I have known him many years and he always has some good stories to tell. Of course the names have been changed to protect the innocent, and actually the not so innocent sometimes. My father has began to curse. Not unlike someone with a well known illness. He gets frustrated and blurts out four letter words that my mother absolutely forbade in our home. She has a strong and immediate reaction which seems to spur him on to do it even more. Last night she began to yell at him and got very upset. I must tell you that this is quite funny to witness. My belief is that words are just words. In my home we never ran around cursing all the time, but I never made it such a huge thing either. My son never went wild with cursing but if a words slipped out here or there I just ignored it. We have all advised my mother to do the same but she refuses.
Tonight I began to cough again and I am wheezing horribly. Use of the inhalers does not seem to be helping. I am hoping with all my being I am not going to have a pneumonia relapse. I have read that stress can contribute to this and also once you have had pneumonia you are more vulnerable to having it again.
I will see how I am tomorrow. I have used up two of my four times I can call out for the year which doesn't end until March. I keep hoping they will revamp this policy.
Other than that I really stayed home. Was home all day today and most of yesterday. Trying to just relax as much as possible.
Our anniversary is approaching at the end of August. Trying to think of something that I can afford which will put a smile on Rob's face. He is quite appreciative I must say which makes giving him anything a pleasure. Seven years. We have known each other ten years and he is still here. I know it wasn't easy moving nearly three hundred miles away from the town he had always lived on, friends and family. He is now a proud New Jersey homeowner. Most of the time, life is good.

Tuesday, August 04, 2009

Hoping for a good night's sleep

I have found it difficult to sleep lately. For one thing I have a nagging pain below my left breast. I am wondering if it is a muscle that was strained or something else. I am taking ibuprofen for the pain but I am not supposed to take very much of it. When the pain prevents me from sleeping I bite the bullet and take it as I have the past few nights.
It is very hard to get my mind to turn off. I never did hear from my mother-in-law. Not a single word and it's been nearly a week since I left her the messages. Obviously, she doesn't seem concerned that she hurt my feelings. I guess that tells me everything. I did send my niece a note explaining how terribly disappointed I was not to get to see her. I wonder if she'll get that note. Rob and I have discussed this at great length. My son wants me to delete my Facebook page because he feels that it is entirely too stressful for me to have something that can cause such upset. I have reconnected with several people on it and would hate to do that. I did send a letter of explanation to my husband's aunt who posted. Just to clear some things up. It is obvious that things have been said from one person's perspective. Do people not understand that most things are skewed by each person's perspective?
I have to get up early tomorrow as I did today. Today I left my house an hour early so that I could mail a photo album I made for a friend's daughter. The friend had passed away and I duplicated all pictures I had for each of her daughter's. The other daughter was thrilled with hers. I also picked up a birthday cake for my boss and took it to work. It's been a long day and I am so tired. Just hoping and praying for a good night's sleep.
I have friends who are being supportive, a husband who loves me and my family who love me...... why do I feel so alone at times? My sister is coming this weekend. I look forward to that and a chat with her friend who is a therapist.

Friday, July 31, 2009

Yesterday was a rough one...........

I have to back about ten days to start this story...........
About ten days ago I commented to my husband that it seemed odd we had not heard from his Mom since July 8th. She called to wish me a happy birthday and I was in bed newly diagnosed with pneumonia. Didn't talk to her. I tried calling her back about a week ago and got no answer. Left a message saying it had been quite awhile since I had spoken with her. Mentioned this to Rob a few days later who said she had said something about taking a trip to Michigan around the end of July. Now I am thinking is it really possible she would go on this trip and not call and say goodbye or don't worry? Rob then tries to call her cell phone number to discover it has been changed and he doesn't have her number. He then calls his cousin in Michigan and low and behold she is there! She only talks to him a few minutes but mentions on her way home to Rhode Island she would like to swing by and take us out to dinner. I am so excited at the very chance that I am going to see Cassie, our ten year old niece. Because of several things (my job only giving me ten hours off a month for sickness, vacation etc and they are ALL used for illness), my Dad's health which has gone down the toilet in the past year and financial reasons (Rob just went back to work, and even at that, he took a pay cut). I love this little girl. I met her when she was about eight months old and barely walking. I watched her at her grandfather's wake so her Mom could greet visitors. I adore her. Her Mom was only thirty-three when she died of cancer and that night I laid in bed with her while her grandmother, aunts and girl cousins went for a final visit. I dressed her for her first holy communion as her mother requested and watched the pain on her Mom's face as she was unable to do it. Her Mom told her to always let me help her and that I would always be there for her. I have tried, with all of my being to live up to that request. Her first birthday without her Mommy she turned nine. We drove up to Rhode Island and I had an American Girl doll for her with the furniture and stuff. She was thrilled beyond words. There is something about this child that from the MOMENT I saw her melts my heart. Even to see her for a few hours would be a wonderful diversion from my grandmother's final days and my Dad's illness. The night before they were to come my husband got a phone call. She wanted us to meet them at four. While Rob could do that, I could not. I work until 5:30. She told him they could not wait for me. Rob at first said that he couldn't make it either then. When he hung up I told him that IF he could make it without me, he should go and see her. The next day his mother called him on his cell phone at work and told him that she wanted him to meet them at the mall at four o'clock and they would grab a quick bite and leave. He agreed to do that, texted me and I said sure, go ahead. As the afternoon wore on I got a literal pain in my stomach. It is one thing to know that this little girl is hundreds of miles north but she was literally in my back yard this ONE day. It was unbearable to think they would not wait. I texted answer. I asked if I could leave work: NO. As I began to drive home I was overwhelmed with grief, then hurt and despair. WHY could they NOT wait? I just kept thinking of how this little girl had spent several days with her mother's cousin and in the Spring several days with another cousin. Why wasn't she spending time with us? I called home and Rob said they had left from the mall. I didn't have my mother-in-law's cell phone so I called her house and I left a message. I told her how very hurt I was. I might have cried, I know my voice was breaking as I told her how I felt that we deserved to spend time with our niece. Later I came home and I made a post on my Facebook page" I am very, very hurt that I did not get to see my mother-in-law and niece because they wouldn't wait two hours." Next thing I know one of my husband's cousins posts a post that I am attacking her mother (NEVER MENTIONED), her aunt and portraying them as heartless and cruel. Please reread my post. This could not be further from the truth. Several of my friends made posts saying I had not done this which seemed to incite her to make yet another post which was unkind. It went on and on and tonight I deleted the entire thread. What gets me is that she completely overlooks what was done to us. Rob spent ONE hour with his niece and I had no time. But she drove her across the country to see her mother's cousin. (Please don't misunderstand these cousins are wonderful people and we love them).
Rob made a post stating that his mother took two trips in the past few months and both were to see cousins. Today his aunt replied with a post to his post stating that his mother has asked to come and we always tell her it's not a good time. This, sadly, is not true. Last June, 2008 she wanted to come. We were committed to a wedding in Philadelphia of my childhood best friend. Had we not gone, friend would have been hurt and we would have lost the deposit on our room. She never called again. We had begged her for years, nearly once a month to come and each time we were told no, she couldn't get away. Right now my evenings and weekends are filled with trying to help my parents. My sister-in-law, Leslie who was also helping is in a rehab. Her leg bones are shattered. She has synthetic bone and cadaver bone implants. She is having it very rough right now.
Perhaps I am selfish but I think that my mother-in-law could have said "If we stay to see you, it will be late. Can you put us up for the night?" We have a guest room with a queen sized bed and we have a comfy sofa. It would not have been a problem. I wish I had been given some notice of the trip because I could have tried to get special approval for that afternoon. However, they seemed intent on only being in our area ONE hour. They live five hours away. I don't understand why we were not allotted more than ONE hour. I"m sorrry but I am still hurt.
Perhaps what is even more hurtful is that noone wants to admit that we were not given any real thought. Regardless, I missed an opportunity to see Cassandra. I have to honestly say that I think she is the one who lost the most yesterday but not having time with her uncle and aunt. How sad is that?