Sleeping Sickness?

For the first ten days home from the hospital I was unable to sleep more than two hours at a time. Coughing kept waking me up and laying down seemed nearly impossible. For the past three days I have slept about eighteen hours each day. I did wake up this morning at four with a coughing attack that actually got my chest aching. You can still here congestion in my lungs and I cough up so much stuff on an hourly basis. I must be continueing to make it. Lat night I also woke up drenched from head to toe, even the sheets. This concerns me as it kept happening when I had the infected heart valve. I see the pulmonologist on Thursday. She has me scheduled to return to work March 7th. Right now that feels so close. Of course, if necessary, that date can be pushed back. I find that each bout of this illness leaves me weaker and the recovery slower and more difficult. I have learned that I have small lungs, that they no longer yield a normal x ray even when I am doing well. When I was in the hospital I was in "serious" condition. I wish there were a magic pill I could take to guarantee I not have to go through this again. Not being able to breathe is miserable. Coughing until you gag is miserable.
I feel isolated here but I am not up to going anywhere or visiting people. Tonight a neighbor showed up with a few bags of fresh produce and fruit and cheese. I so appreciated that gesture of thoughtfulness.
Today is my sister's birthday. Thursday is Rob's. I sent my sister a card and check last week. I am trying to think of something for Rob. My brain seems disconnected. I know, this too shall pass.

Home Again but still sick

I was released from the hospital on the 20th I believe. I begged my pulmomologist to let me leave, and she did, without full support from the ID doctor. I have paid for that and in hindsight, I should have stayed a few more days. Rob is wonderful but he has taken off so much time already to help me and I insist he go to work. I have visiting nurses but they see many patients each day and don't spend a lot of time, although I am encouraged to call them with any questions or if I want them to come at any time. This is old school for me. Thing is, the other two times I came home with a PIC line I just had to give myself two ivs of vanco twelve hours a part and one shot a day of Lovenox. (This is a blood thinner that is injected into belly fat. For some reason at times it is very painful and minutes later feels like the sting of a wasp.) My stomach looks like I took quite a beating. Still, as of Friday my blood was not thin enough which poses a danger to the heart valve, so I continue getting two painful shots a day. The ivs are two that are twelve hours a part but the other must be given four times a day, every six hours. This is a new antibiotic they have me on. The antibiotics that worked in the past failed this time. What I did have going for me was that I went to the doctor early on Monday and was on oral antibiotics until Thursday when they sent me to the ER to be admitted. At that time my fever was steadily going up. The chest x ray showed a very minor pneumonia in one lung but the CT scan showed it was in both lungs as well as a lot of fluid.
On my home regimen I am also received three breathing treatments each day. To be honest, they reduce the wheeze but I still cough, a lot.

One thing I value is that I am always open and honest. I am very discouraged right now. Firstly, this is my fifth bout of pneumonia in just under 18 months. FIFTH! This was my fourth hospitalization. This time I had fluid around the heart which I have not had before. It takes me longer to recover and it's hard to motivate myself right now. My lung doctor is wonderful. She understands and spent extra time talking to me, trying to encourage me. She shares my concerns though. One night she had them bring me a small bottle of wine with my dinner as a reward for fighting so hard. I consider her and Rob my support team. In this world good, dedicated and caring doctors are not easily found. I let her know constantly how much I appreciate her.

I am still waiting for forms from my company that were being overnighted to me on Thursday. Until then, I cannot file my short term disability papers and that means at least a month until I get a check once they are filed. Thank goodness we have an emergency account we can hit. Since it was the new year insurance wise, I had to pay several hundred up front for meds and such.
Well, I had only a few hours sleep last night. I couldn't sleep laying down and I sat up in a chair for the sleep I got. Sometimes I wish I had a hospital bed here so I could raise the head when having breathing issues. I never gave it a thought until I had the lung issues how difficult it makes your life. Walking short distances leaves me gasping or coughing. It is my fervent hope and prayer that my lungs will improve. I just hope I can be patient enough until that happens.

Nelle Update

Hello all, Rob here.
Nelle was admitted to Robert Wood Hospital on Thursday with Bilateral Pneumonia, and fluid in both lungs. Also some fluid around her heart. She has been receiving IV antibiotics and some breathing treatments.
Her Pulmonologist is happy with her progress and she may be sent home soon with a PICline so she can receive IV Anti-biotics at home.
She has no computer in her room but can receive emails on her Blackberry via her NelleMcLaughlin@gmail.com addy.

Saturday Snow and Sunday Sunshine

Yesterday I had so much to do. Jumped out of bed bright and early and we began taking down the Christmas tree. When we finished with that we made a trip to the mall where we picked up a few gifts and had lunch. My childhood best friend's daughter just had a baby herself. It seems like not so long ago I got the call from her mother's delivery room telling me she just gave birth to a baby girl. She had a son and was so thrilled to be having a daughter. Her daughter had the most beautiful pictures taken and a video done. What a treasure that will be for years to come. Yesterday I was able to purchase some really cute clothing for her baby and it was fun. The snow began really falling and sticking and we cut our shopping short and came home. We continued putting away so many little decorations. Each year I receive more as gifts and at times I find it overwhelming what to keep and what to get rid of. I have many ornaments from friends and family members over the years that each inspire a memory. My favorites are the ones my grandmother made for me. They contain a silver coin from our birth year and she pained our names on the plastic cases. It was so hard not to have her this year. I still miss her terribly and feel the void left by her passing. Ironically, in my garage, I found the tiny pinafore apron she had made for me which matched hers. It had Santa coming out of the chimney.

I have struggled with my breathing this week. Most mornings I am coughing up blood when I initially wake up. I have an appointment to see my regular lung doctor on Thursday. I saw her associate ten days ago and the antibiotics he gave me did nothing. I am still coughing and feeling tired. I have also learned that the heart infection I had in my vitral valve last year has damaged it, causing a thickening which is causing valve regurgitation. I see the cardiologist later in the month and we will discuss this further. Apparently the problem with the heart not pumping well is causing the lungs to remain wet and vulnerable to illness. It's like a puzzle, with so many people trying to assemble the pieces and see the overall picture.

Well, I need to go grocery shopping. I am thinking a bit pot of chicken soup might be in order. It's really cold out the but sun is shining brightly. My New Years Resolution is to try to see the good, even on the cloudy days.

Christmas and a Thirty Inch SnowStorm

By Christmas Eve I was really under the weather. I had off work that day but I just laid around most of the day. Also we discovered that our leaking faucet was now not only leaking along the top and spilling onto countertops but the hot water was leaking below. We called a neighbor over who had been a plumbing apprentice so we thought he could show Rob what to do. We had the new faucet it was just getting it installed. Pic of new faucet on left. He was not able to do it saying we needed a special tool but he did try to rem

ove something making the water leak below much worse. We had to cut the water off. We went to bed early then woke up wondering I would be making Christmas dinner. My mother had my sister there making a turkey but I was not up to going there. My mother's house is way up on a hill and on my best days climbing all those stairs wears me out. So I put the ham in the oven and hoped for the best. Called my sister and her friend was coming there for dinner and I knew he did a lot of his and her home repairs so I asked if he or my Dad might have the tool. She said they would eat and be here around 2 and yes, Dad had that tool in the basement. We waited and waited and when they were not here by 5 I called another neighbor who was a plumber before he became physically disabled. I explained we didn't want him to do anything but lend the tool. A short time later he and his wife showed up with the tool and Rob began the process. It went rather well all things considering. Once he was in the thick of it my sister and David showed up (of course.) The faucet is wonderful with a sprayer that pulls out OR you can just push something in and it's like a shower in your sink. It was a good choice for us. By the time our neighbors left, hours later I was exhausted. My sister then left and I felt sure it was midnight but it was only eight p.m.! We had only had some ham for dinner (no sides).We had a slice of cake and went to bed shortly.

My Christmas was different but honestly it was one of my better ones. Rob surprised me with a Kitchen Aid Artisan and since I love to bake I was thrilled. Had wanted one for years but couldn't commit to a color! He chose my favorite and it looks great.

The day after Christmas we got hammered without about thirty inches of snow. Both of our companies closed so that was good we had an extra day off. Our biggest problem was making a place for Duffy to go to the bathroom. Rob created a zig zag of sorts. The next day our roads were really bad and so was my cough. I decided not to attempt work which was all back roads. A family member with a 4X4 took me to the lung doctors. They tested me on a machine and told me that I was wheezing again which is usually a bad sign. I have bronchitis and they want to make sure it doesn't become a pneumonia. He gave me the pneumonia antibiotics and an inhaler and sent me on my way. If the wheezing doesn't stop I am to call him and he will give me steroids too. It is already somewhat better.

I took off this morning to go to the dentist using vacation time but I was not up to it and it's a long trip there on roads which still need more plowing. I am going to work half a day (1:30-5:30) today and a full day tomorrow. Then my Friday, Saturday and Sunday off. Yes! Time to use that mixer. Since it's green my friend, Simone has dubbed it the McMixer lol.Green is such a relaxing color but I am surprised at how many people do not like it. Several of my friends love orange which is not a color I like. To each his own.

Well, I want to wish all of you a Happy, Healthy and Prosperous New Year!

In 2009 I had pneumonia three times and had two lengthy hospitalizations. In 2010 I had it one time and a two week hospitalization. My goal for 2011 is NO pneumonia and NO hospitalizations. I am making progress each year. :)

Have a wonderful weekend.

Friday Update

Today my former boss came in to see a few people and get her mind off her troubles. Her hand is bandaged. She was telling me she left the housefire with only the clothes on her back. Someone had given her jeans, a blouse and a winter coat so she had something to wear. It was good to be able to give her a big hug. Afterwards I left a bit early and went to Target. I was able to pick up a few items on sale for her: a bathrobe, pair of pjs, shawl type scarf (she had them in all colors) and a giftcard for some makeup. We are having a pot luck celebration on Monday and giving our secret santa gifts then so it will be nice to have a gift for her. Some of those participating in the Secret Santa asked for gift cards to give her. I requested an ITunes card knowing she was given an IPhone by the company which was lost, along with her laptop, in the fire. She can at least download music into her phone.

This Christmas has been better for me than last year's. My biggest problem though is parking and walking into stores. Unless I can park VERY close I am unable to shop there. I try to go into stores which have carts I can lean on. This helps so much with my walking. It also makes it so much better when I don't have to carry items. This includes my heavy pocketbook. Although I keep trying to lighten it, there are so many things I feel I must have with me (a diabetic tester, strips and lancets, various medicines, an inhaler, a wallet, a two inch thick packet of cards with doctor information etc., hand santizer and individually packaged wipes.) These are things I just don't feel comfortable leaving at home. I have tried putting all the information possible into my new phone, including doctor appts on the phone calendar. This is helpful but I just can't seem to do without the other items.

I have not had my teeth cleaned since June of 2009. The reason is that during that cleaning I became sick with the heart valve infection which it took about 8 months to discover. I am nervous about doing it, but I must. I have had my teeth polished at the dentist but I am talking about the gum cleaning. I will be on antibiotics for it, stronger than I previously took. My appointment is Dec. 29. I know I have to do it sometime and I have procrastinated enough. Time to just do it.

It has been bitter cold here, 21 during the day and it was 0 at night. They are talking about a Noreaster Sunday. We shall see. Have a good weekend. I only have a few minor things left to get. It's almost here.

Sad News

Today we got some sad news at work. My former boss who was such a sweetheart had a fire in her apt. over the weekend. She lost her beloved cat and I understand she got injured trying to save the cat. She has nothing but the clothes she walked out the door in. It's so heartbreaking because she was one of the few people I ever worked with who reached into her own wallet when she knew someone needed lunch. She offered to give me her personal vacation time to use as sick days if I needed them. Our company sent her out a new laptop and cell phone today so we can be in touch with her. My heart really goes out to her, especially this time of year.

It is bitter cold in New Jersey. Twenty one degrees right now and going down to 0 tonight. Whew! Thank God I have my Smokey as a foot warmer. lol

We are going to be taking up a collection for our old boss. It's hard this time of year to find extra but we will all manage. This Christmas has been about giving to others for me and I have enjoyed it so much more than other Christmas seasons. Have tons to do but wanted to make a quite post. Say a little prayer for my friend as her heart aches for her fur baby.

Life Goes On

My life has felt so hectic. Thanksgiving I made a 20 pound turkey. My father's hospice nurse didn't show until hours later so my mother and sister decided just to eat there with their small bird. It was just Rob and I. Later I took them some of our turkey too. It was great to have four days off work but honestly I had so much to do that they flew by. I was able to get some car work taken care of, wrap some Christmas gifts and get the cards written and sent. I also have slowly used the Cpap but only once for the entire night.

Many changes at work. For two years I had the same boss. I just got my FOURTH boss in less than a year yesterday. It's so hard to get used to each one and then they get promoted and move on. I am glad for them but it's hard on us. I will be moving back to my old team (along with half of my current team) and these people are just so thoughtful and loving I am excited for the change.

I am fighting depression this season. I lost my grandmother before Christmas last year but I was so ill I just wasn't really dealing with it and grieving. This year it has hit me like a ton of bricks. I cry daily, sometimes several times throughout the day thinking of her. I know this will pass but it's difficult now.
My aunt said she feels the same way but that we have to think that she is where she wants to be and her suffering has ended. There are things worse than physical suffering.

Well, time to get some bills paid. Hope you are all in full swing for the holiday season. Happy Hanukkah to those celebrating.

Serenity Found Me Today

Today was a relaxed day. I had a nice glass of wine as I loaded some music into my laptop which is now a year old. I got a blackberry last weekend and I am trying to get some music together to load into that. It was so odd, my grandmother's estate was finally settled. I didn't get a lot of money but for the past year extra money has been rare so we splurged. We each got the blackberry torch (a great deal I might add) and I finally have internet on my phone. I also got two pairs of boots which were badly needed.

Yesterday a respiratory therapist came and delivered my Cpap machine. They name is discomfort. This is what the mask looks like and it is fastened to your head with two separate elastic bands. The top one dug into my head but if it is too loose then there is no seal and the air leaks out. Grrrr. I only made it an hour and a half last night. Going to try to do better tonight. She said it would take time. Perhaps in a year or so...lol.

I am still in my pajamas. My ex went bonkers if I didn't get dressed early in the morning. When I didn't feel well it was really difficult. I am so glad that my life has changed in so many ways. I have freedom to do what I want. Rob never tries to boss me around. He accepts that I am his equal and that I am perfectly capable of making whatever decisions I might need to. Even when I make decisions that he is unsure of, he supports me.

I have had to make some decisions lately that have been difficult and lead to some family upsets. Due to my health I will not be going to my parents for Thanksgiving. My Mom refuses to use her dishwasher and she is getting very bad about washing her dishes. It's a chance I just cannot take. I have tried taking over plastic things and it just doesn't work. My mother understood but my sister was upset, feeling I wasn't making enough of an effort. Well, last year I missed a total of 7 months of work due to illness. I no longer have FMLA and if I go out sick again I can be let go. Sorry, these are chances I cannot take. If I get sick taking precautions, then so be it but I won't put myself in harms way.

Never having been sick a day in her life, she cannot understand what I am going through. I get that but I told her she needs to stop expecting things of me that I cannot give. I am willing to send dinner over to them but not cart an entire meal. My mother has about a dozen steps to get to her front door. I gasp for air and that's without carrying anything! I am on one new med that has helped, at least some of the time. In two weeks the cardiologist will consider changing another med I have been on, thinking it is now part of the problem. We shall see.

Christmas is coming. I refuse to stress myself. From here on out it's about enjoying the moments. I am going to work each day and my down time will be spent doing what I need to do for me first. After that I will be happy to help friends and family, providing it doesn't have a negative effect on my health.

I feel like I am in a good place.

Have a great Thanksgiving. We all have so much to be thankful for: a roof over our heads, food on our tables, love of family and/or friends, and I am grateful for technology which lets me communicate with you. I am so very grateful to Rob, always there, never complaining and just loving me. It doesn't get better than that. My prince came. He wasn't tall or rich but he was honest and kind and loving. I can't imagine how I would have made it through the last five or so years without him. I think I'll keep him. :)

An Update

For several months after I expected to see improvement in my breathing, I have struggled constantly if I was moving. A few weeks ago I went to them all to pick up some gifts and barely made it to two stores. By this time I was unable to make it back to the parking lot and my car. A visit to the lung doctor told me it was not a lung issue. In fact, she said my lungs sounded good and the oxygen function had improved from the previous visit. She suggested I see my cardiologist. (For those of you who might not have been reading my blog at the time, six years ago I had heart surgery to replace my aortic valve with a mechanical one.) Since then other than an occasional bout of tachycardia I have been fine. Okay, there was the one episode of endocarditis but it was a different valve and antibiotics cleared that right up. My point is that my heart was functioning well.

On Monday night I saw my cardiologist and he was very upset after seeing me that I had not come sooner. I had cancelled on him, he had to reschedule me and my visit to him was two months later than he had requested. He said my heart had not pumped the fluid out of my body and he suspected I had a minimum of twenty pounds of fluid and that is why I was breathless and tired. I had this problem in the hospital immediately after the surgery but not since then. In the hospital I had over thirty pounds of fluid but laying in a bed wasn't experiencing any problems from it. Your heart is a pump and when it doesn't do the job as it should, that is congestive heart failure. It's not something that you die from quickly but over time it weakens. They are going to be watching me carefully now. I was put on lasix, a drug to remove the fluid and in twenty-four hours about twenty pounds of fluid came off. I can walk AND breathe at the same time. It feels so good.

I have never been one to take life for granted. Since my original diagnosis at age 23 I have known that life is fragile. Waking up each morning is a gift for me. I was shaken up at what the doctor said but I have survived so much and there is a lot of spunk left. I am not going to make any changes for now. I will be taking the prescribed lasix for certain. They are also going to try another medicine and get me off my current blood pressure medicine which may make this problem worse. I am glad to know what the problem is and that there are things we can do to make it better. I expect to be feeling so much better and that brings me great relief.

If you have your health, don't take it for granted. It is something so precious and no amount of money can buy it. Life is good. Enjoy it. :)

Chugging On

I am so tired. I wake up tired...drag through the day and crawl exhausted into bed. This is not how I planned to live my life. There are many reasons I am like this. A sleep study showed that I do have sleep apnea but they told me it would be about two weeks before I would hear from the doctor and I am still waiting.
I am coughing again...and wheezing. The breathlessness is so bad at times that I cry out of sheer frustration. Other days it is not so bad and that makes me crazy wondering WHY? Tomorrow I go to the cardiologist and I feel that is a big waste of time. He never does anything that helps. The only reason I still go is that he monitors my coumadin and I have to have someone who does that.
I am sick of thinking about/dealing with health issues.

I have been at my present employer for three years. I was told I would increase my hours off each month. Have not seen the increase yet and I am eagerly waiting for it. For the past three years I have only had 10 hours off each month. That is for ALL days off; sickness, emergencies, vacation etc. I have never had one day off during that time for vacation. It has all been used for illness. Right now I have one day left which I am planning to use for the day after Thanksgiving. IF I get sick before that day then I will have to work that day.
All my family and friends have off and it is torture to work that day. I am so hoping to have it off. By the way if I call out sick the day before or after a holiday I don't get paid either. Once I was so sick I had no choice and sure enough I was not paid for the holiday. I understand why companies need rules but sometimes people cannot plan their illnesses, OR emergencies.

I went to my friend Pati's this morning. It was a brief visit with me dropping off stuff for her new place. Long story but she got herself in a bad situation
and ended up leaving all her stuff in Florida to get back to family and friends and away from a bad situation. Starting over in your fifties is rough. I was happy to share extra sheets and other things to make this place feel like home.
Her granddaughter was there visiting her. What an adorable child with long, curly red hair. I took her a few items too. I am searching for a mommy and me apron set to give them and I have a gingerbread house kit that I am taking them. Also trying to find an inexpensive cd player and some Christmas music. Most of my best childhood memories are with my beloved grandmother. I recently got a check from her estate. I am trying to use a portion of it to help others. That was what my grandmother spent her entire life doing. She never had a nice pair of shoes and we cried when we saw that many of her shoes had holes in the bottom but if she knew of a child who needed food she was at the store getting them groceries. She lived in a modest home, dressed modestly and was a humble woman but when she died all who knew her praised her life of service to others. I still miss her terribly and I think I always will. I hope to be a small part of the example she lived on a daily basis.

Greetings and Salutations

I haven't been blogging much. Truth be told, I have been so tired that I am barely making it to work each day. Many, many changes at work. The first two years I worked there I had the same boss. I went out on disability (2nd bout of pneumonia) and returned to a new boss. Out again three months later and when I returned, yet another new supervisor. Huge adjustments for me. I have been back about four months and just gotten used to this supervisor when she announced last week that she has been promoted. Not even sure who our new boss will be. Her assistant is going out for the month of December and I am nervous about who we will go to with problems.

Last week I had a doctor's visit then the sleep apnea study. I was so tired at work last Friday I could barely function. This week has been another stressful week. Last night I came home, just wanting to relax and Rob went to my mother's to pick up something. He returned with check. This was some of her money from her mother's estate. I understand inheritance but I would much rather be given money from someone during their lifetime. I have decided to do a few good things for others with at least part of the money. I have a friend who just moved into a modest home (I cried all the way home after seeing it.) I am going to find her Mommy and me aprons for her and her granddaughter. I will also take her baking pans and supplies for her to make Christmas cookies and I will take everything for them to make a gingerbread house. I will have vicarious pleasure. Perhaps get some pictures of them which can begin an album for Kayla. Kayla lives with her Dad who has custody of her. She is a young six years old and started school this year. It's hard for a little six year old to understand why Mommy doesn't show up for things like other Moms. Her Grandma plays a key role in her life. I think Santa will leave a few things hidden under her Grandma's tree (perhaps another gift.) For the first time, I am excited about Christmas this year.

Fox was off of our cable station for nearly two weeks. They are finally back and I am going to view tonight's shows. Tomorrow is Friday. Can't wait.

Still alive and kicking

I guess it's been two weeks since my last update. Sorry but life is moving so quickly and very unpredictable right now.
Work has been chaotic and stressful. Last weekend my aunt came to visit my Mom for about five days, then my sister came for the weekend and on her last day here my older brother came from upstate New York.

For awhile my back has been in pain. Not a sharp pain but a constant ache. The worst time was when I woke up in the morning. I couldn't even stand up straight. Last Saturday I went to the doctor to see what, if anything, could be done.
He referred me to an osteopath which I saw on Wednesday. He told me that my muscles all along my spine were very tense and some in knots. He did some manipulations to help them relax. He also prescribed anti inflammatories as opposed to the muscle relaxants the first doctor had prescribed. I began taking them and when I woke up the following morning I was in so much pain. I was wondering about the saying things get worse before they get better. The next day and since then my back has improved significantly. I go back to him in another week for a follow up visit.

This weekend was very low key for us. Rob didn't feel well Friday or yesterday. He slept a lot more than usual. We did go to the grocery store this morning for things we desperately needed but other than that it's been all about vegging.

Our Cablevision is really annoying us as well as it's other customers. We overpay ridiculously and they never give credit even when it's due. Our DVR makes noise constantly and their tech told us that they all do this. Now they have lost all the FOX network shows which we watch. If this isn't rectified by early next week I will switch to the dark prince Verizon Fios. All these companies are ridiculous. It's okay for them to overcharge their costumers but when they are faced with paying out top dollar they put a message on asking customers to complain to the station owners. I am not bundled because I refuse to have a phone that might not work and I pay a ridiculous amount of money just for the cable tv.
I am willing to walk away after this being the third time we have gone through this with them.

Well, time to sit back and veg a little more before the work week begins. On Thursday afternoon I see my lung doctor again. My lungs sound good I am told but I am still very short of breath.

Serene Sunday

Yesterday was a bit hectic and neither of us were feeling well. Still I made it to the hospital for my check of the blood thinner I take and to the tailor to pick up the jeans I just had hemmed. I stopped by my parents after that. My Dad sleeps more and more these days. His voice is so weak and I wonder sometimes does he have moments of clarity and realize what has happened to him? He never indicates that he does. He was always as strong as an ox and I will never get used to seeing him so helpless.

Rob and I watched The Blindside on tv. That was a good movie.

I am so saddened at what happened to Tyler Clementi, the young Rutgers student who took his own life. I hope the roommate is prosecuted for a bias crime. He needs to be made an example of. To tape and broadcast ANY sex act of another person is dispicable in itself. To do this to someone, a young man, in this cruel and gayphobic world is even worse.
My heart aches for the family and friends of this talented musician. Bullying also needs to stop. I have a close friend whose son took his own life. He was being bullied and being labeled by others. He was so young but couldn't bare the pain of it all. I wish people could wake up and teach their children to be tolerate and kind of others. My son never heard the slang words which label people. I remember when he went to school coming home and asking what words meant. I told him they were words that he didn't need to know or use, ever. I am proud that he judges people on their actions (meaning how they treat animals and other people) not by their color, ethnicity or sex. He was exposed to all kinds of people and he often chastised others who didn't treat peers respectfully. While other people's goals were to have their child in a prestigious college, mine were to raise a good person who cared about others.

My personal chef, Rob has prepared a dinner that is perfuming the entire house. A pot roast with "ROOT' vegetables.
We both took a short nap today and I have caught up some on my sleep. The weekend as usual has gone too fast but another will be here before we know it. Have a good week.

Saturday Wind Down

Had a really bad attack of IBS in the wee hours of the morning but I was able to go back to sleep finally about 5 and slept until 9. got up and jumped right into what needed to be done. So many errands: took new jeans I got at TJ Maxx to tailor to have about three inches cut off the pants legs. It's hard being 5 2. Rob drove me and we stopped in a pizzeria and I got a salad and he got bruschetta pizza that looked so good. After that we ran to the grocery store and it seemed we just did a fill in kind of order but it still came to $120.00. I did get two bouquets of fresh flowers that I love. Sometimes I just treat myself because I do work hard for the money. We came home and I loaded up the dishwasher and turned it on and started in on the laundry. While that was going I sat down and paid bills. Amazing how quickly $1600.00 goes out the window. A mortgage payment and a few other bills add up quickly. I was happy to see that the hospital refunded me $100.00 on my credit card. I also made a call a few weeks ago and got my primary insurance to pay $250.00 for a bill they processed as out of network. Come on guys, you paid to have a line put in my arm but then want me to pay to have it removed? I am on blood thinner and didn't think having a home health visiting nurse yank it out sounded like a good idea. Last time when it caused a major problem you spent thousands on an ER visit so this was a bargain for you. Really.

Next I cleaned out my refrigerator and sent dinner over for my parents. Chicken and biscuits which Dad loves. Also fresh cooked green beans. We had dinner and I just got done with the clean up and the laundry is about ready to fold now.

Rob has also been keeping busy doing things for me. He put the garage back together after I dismantled an area to find a box to mail our nephew a birthday gift in. Adam was so happy with what we sent and pronounced me a shopping goddess. I got him a nice pair of jeans and hooded flannel shirt from Macys and Rob got him two books he loved.

Not sure what's on the schedule for tomorrow. We did most of what we needed today so maybe it will be a day to kick back and take it easy although we never seem to actually do that. There is always just too much to do on the weekends.

Hope you are having a good weekend. It was 88 today but tonight it will cool off. I so welcome the cooler weather.

The passing of time

This past year has flown by. For much of it I was so sick that the days unmarked. When I realized the other day that October 14th marks my grandmother's passing as one year then it hit me. I have been going through life on auto pilot much of the time.

About two weeks ago a problem I thought I no longer had reared it's painful and ugly head. IBS. With all the stress with my job, my Dad and my health issues it has been horrible. It is usually cycles of extreme constipation and then diarrhea. I have had the constipation issues and when your job has you accounting for each minute of your day, it only complicates things to the max. Anytime my body is straining concerns me because of my heart valve. Add that stress to the pile that I already have and it only excaserbates the problem.

The past three weekends have been ones where I had to stay home or be at the doctor's or ER. Last night I was afraid I was heading down that path again but after drinking some herbal teas and pacing the floor half the night it seems relief may be in sight. I certainly hope so. It's sunny and beautiful and my sister is in town. I want to get over there and visit for awhile today. I want to have some hours where Rob and I can just relax and communicate about anything other than health issues. On a positive note, Rob's hours changed. I am thrillled about that. He was having to get up at 5:30 a.m. to start his 7 a.m. shift. I could have slept another hour and a half but being the light sleeper that I am his alarm woke me and I was not able to go back to sleep. Now he can get up at 6:30 which means we can have an hour longer to sleep in. With getting up so early we weren't even able to stay awake for the ten p.m. shows we watched.

One of my young cousins, Christie, started a gratitude blog. I read it each day and marvel at how this young lady has turned her life around. She had some rough years but now has a husband, baby and a good job and she appreciates each and everything so much. I am trying to follow her example and think each day of one thing to be grateful for. I know I have so many. Sometimes the health issues overwhelm them and they become my entire focus. This is not good. We cannot change circumstances, only how we react to them. Each day I try to think of something I am happy about.
This week at work we got a raise. It was small but at least it was something. While some people are losing their homes I have a job. When I am too ill to work I have temporary disability to fall back on. These are all positives.
HAVE A GREAT WEEKEND AND THINK OF ONE THING YOU ARE GRATEFUL FOR TODAY.
Have I mentioned lately I am grateful for all of you who follow my blog? I am, more than you will ever know.

Small Update

I have been neglecting my blog and everything else this week.
On Friday last I was in the emergency room with potassium that was too high. I sat around last weekend like a slug trying to get some energy and struggled to make it through the days at work. Was feeling better yesterday and so relieved it is Friday today. I am actually runnng late getting ready for work but wanted to post an update of sorts.

Last week we noticced my Dad could no longer follow our voices with his eyes. His speech, the few words he said were fewer and inappropriate for our questions and then he lost the ability to hold a spoon and feed himself at all. It is heartbreaking to watch. On Sunday the head nurse of the agency came and verified he had another stroke. He has lost a lot of ground this time. This is his third major stroke in 18 months. I have to marvel that his body survives them. At this point, to survive them is a betrayal of his body. He has lost any quality of life that he once had. They have arranged now for hospice to come. There is a DNR order and they will keep him comfortable but no heroic efforts and I am very comfortable with that. My mind is constantly distracted with thoughts of how much longer he will behere and how my mother will handle it. She lost her mother less than a year ago and I don't believe she had dealt with that at all.

I feel ready for him to leave us. Yet I know when the moment comes it will be very sad. Not for the man he is now but for the young father who was so proud of his children and always made me feel protected. He was never perfect and I would not portray him as such. Still, I have felt a slow but continuous loss over this entire time. I just pray that his end comes peacefully for all our sakes.

September 3rd

Today is September 3rd and the twentieth anniversary of my son's diagnosis with leukemia. I remember the day, what I was wearing, the phsyical pain in my body immediately after being told. At the time they told us he was double high risk. His age was a huge factor against him. IF you are under five or an adolescent you are at much higher risk for survival. That was the day I met my friend Paula Grandin.Her son was in the next room having been diagnosed earlier that week. It would later turn out that my son Tom was "lucky" to have ALL or childhood leukemia. Danny had AML which was harder to treat. I am still in contact with Paula who moved away to the South.

My world changed so much that day. I would never again see it as the place that had previously felt so much safer.

We are so very fortunate. Tom survived. I do believe that my research in the medical library, contacting doctors at both Memorial Sloane Kettering and NIH had something to do with it. Ihad to make a serious decision as to the protocol he would be given. The doctor felt the standard would not be enough for him. There was no sibling for a bone marrow transplant. I had already had cancer myself so I couldn't be considered for a donor. There was new protocol which was much stronger. It could cause many other problems. I had to go for it. My son had ONE chance and I wanted him to have all the artillery he could. One side effect of that protocol was he got an infection in his leg. It was very serious and he went septic and ended up in ICU for several days. He was in so much pain. At that time I began to question my decision but reassured myself it would be okay.

At the tiime I was still married to his father. His father couldn't handle it at all. He ran from the hospital the day they told us he was not in remission and things looked bleak. He didn't come back for over a month. (The first four months Tom had to be inpatient due to many reactions and complications.) I slept in a recliner by his bed the entire time. He was afraid for me to leave him and frankly I just couldn't.

The outcome is good. Tom is still here. Honestly, he underwent some changes both physically and mentally. He has never been the same in some ways. He is here though. Still with us. I have to believe I made the right choice. Still, September 3rd is a very rough day for me. Going to work now and hoping it's a good distraction.

Two more days of work then three days of relaxation

This week is going by slower than most. Two more week days before three days off.
My work is more stressful than it was a few months ago. They have let people go and the workload of those remaining has increased. Our work has a strict attendance policy and most people are let go for calling out too much. On Oct. 22 I will be with this company for three years. At that time I will get more paid time off and I am so looking forward to that.
I am receiving medical bills from all the out of network provider. I think there is a mistake because so far my insurance had paid NOTHING to them. I need to call but they are only open during my work hours which is a big problem. During my week day I get two fifteen minute breaks and a half hour for lunch. The time is strictly monitored. There really isn't time for a phone call. Not when you are also using this time for bathroom visits and obtaining food and drink. There are many positive aspects to my job as well. Like a steady paycheck. I am so thrilled when I get holiday pay. Last year I was out on short term disability and missed all that. This year I want to take full advantage of it. :)

Well time to get dressed. I have been awake for two hours, cleaning up the kitchen, doing my computer games such as Farmville and catching up on emails/blog reading. The weekend is coming and I am so ready for it. Have a good day!

Anniversary Thoughts....and Wedding Moments

Today is our eighth anniversary. Marrying Rob is one of the few things I have never regretted.
I have three distinct memories of that day that I treasure.
One was my childhood best friend looking at me before we walked into the room and I began to cry. "Second thoughts?" she said. "Deb, these are tears of happiness." (Mind you I have only shed tears of happiness three times in my life. Once when I held my son for the first time. Secondly, when my son finally went into remission on the final day where we still were given hope. Thirdly that moment right before I walked down the aisle.) The second moment forever in my mind was when Rob saw me. He was waiting for me across the room and we met in the middle and walked up the aisle together. He grabbed his heart and smiled from ear to ear. It was a moment to make any bride feel the most beautiful ever.
During our reception Rob's baby sister Jennifer came over and we danced. I had them play several Irish songs and one was the "Unicorn Song." Jen and I alone swept the dance floor and had the best time. After that she proclaimed us the unicorn sisters. I was the big unicorn sister and she the little unicorn sister. We gave each other unicorns for gifts and I still have a lovely pink one in my bedroom. We had such joy. She had told me earlier in the year that if her brother didn't propose she was going to because she simply had to have me in her family.
I miss Jen and think of her often but that is my favorite memory of her.
When people take vows, they never anticipate what might happen. About two years later Rob had to support me through open heart surgery. I was in intensive care for a week and it took me a year to fully recover. After that there were many other things to deal with. Rob has had his hands full supporting me. He has never complained. He got angry when one of our neighbors came over and was complaining about having to care for her sick husband. When Rob left the room she told me that he had to resent all my health issues. I just smiled and told her that when people truly love you, they are not thinking of themselves but only you. She said "Then I guess I don't love K."
I know this. I love Rob and Rob loves me. No one can change that. I wish more people could know the kind of love we have felt for each other. The world would be a better place.
Thank you Rob for the ten years you have always been there for me. There has never been a moment I have not felt loved. The last decade has been the hardest in many ways but because of you I've survived it and had great joy. You are the only person who could finish my sentences for me, and the odd thing is you were doing that after I had known you only a month! When I find it hard to keep going, I make myself because of you. You make it all worth while.