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.
Saturday, December 26, 2009
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.
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.
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.
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
::::::::drumroll:::::::::
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.
::::::::drumroll:::::::::
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.
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
Adjustments
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.
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 today...it 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.
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 today...it 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.
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.
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.
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
Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
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.
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
UH OH
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.
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.
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.
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
Update
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.
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
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.
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 IYesterday (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.
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.
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