Saturday, September 25, 2010

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.

Saturday, September 18, 2010

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 I mentioned lately I am grateful for all of you who follow my blog? I am, more than you will ever know.

Friday, September 17, 2010

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.

Friday, September 03, 2010

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.

Thursday, September 02, 2010

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!