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.