Dinner

Dave's working hours have changed everything in the house. Dinner is now at noon and he packs his sandwich for his evening meal at work. He's found the area he is taking his certifications in is just too far away from the main area and he likes sitting outside to eat. Since he leaves at 1:pm and doesn't get home until midnight I have found myself starting dinner at 9:am..rolling out of bed to prepare and cook.

Today I decided to cook tomorrow's dinner so all I'll have to do is heat it up. Of course I'll have to peel potatoes for mashed and whip up some cream for the pie, but that I can handle.

I made stuffed peppers and strawberry pie...I had to taste the pie just to make sure it was good and sweet!

Talking about life's ugly things...

I started this blog for my quilting but it has become the place where I want to keep my thoughts for my son. After covering my Rheumatoid Arthritis the next subject that no one likes to face is death. I feel like I need to explain my wishes so in the future my son is not judged as a cold person. He will be doing exactly what I have asked.

I've mentioned in my profile that I have liver disease. I have to go back to 1979 to explain this. After having huge children I needed bladder surgery, something that is not uncommon for women to have. My surgery didn't go to well when the doctor cut into a vein and I almost bled to death. I was given 2 units of blood after the surgery. Years would past before I had to look back on that time. Back then I was living in Philadelphia and remember seeing signs put up by the redcross offering $10.00 if you gave blood. I remember laughing with friends about it, saying we knew who would be collecting the money...street people.  Back then, blood was not screened. It wasn't screened until 1992. 

Moving ahead to 2002 when I had the first signs of RA, one of the questions asked was if I had ever had a blood transfusion. Before giving you any of the strong drugs for RA, first they give you a blood test for any liver problems. Unfortunately, my test came back with a positive for Hep C.  I knew that was bad but I didn't really understand what the disease was. It wasn't long before I realized that the transfusion in 1979 was actually a death sentence. Many people walk around with this disease for 20 or 30 years not knowing they were infected with it from a past transfusion. By that time you usually have liver damage. I want to blame it on the FDA, but what's the use of blaming anyone when nothing can be done, it's just too late.

This is a dirty disease. Besides people who got it unknowly from a transfusion, a big part of the Hep C population is druggies. The very people I would never have in my life, those I looked down on..the dirty bunch of awful human's....I was now one of them. I still have a hard time dealing with this. How careful I was all my life, doing the healthy things, being the good, nice person. How could this dirty disease get into my blood. I've had no choice but to face it head on, live with it, be sick from it but I'll never get use to it.

My son Dave has not let me down one day. He has seen me through some pretty awful times the past few years. Shortly after we arrived in Texas I took a down hill slide. I thought after going to Pittsburgh last December I would feel better, but it only lasted a short time. Again I am hopeful that my next visit to Pittsburgh this month will make good changes but that might not happen.

When you feel this sick if you have any concern for the person with the responsibility of carrying out your wishes, this is the time to do it. If I told Dave I want to be buried back in Philadelphia with my son, he would make sure that happened. I don't want that. Going back to the Hep C, I have felt dirty from the second I knew what it was. I have told Dave to have an undertaker cremate me and he is NOT to take home my ashes. It just goes through me to think of this disease and know he would have to do something with my ashes. I know burning would clean away the disease, but to me, it just turns my stomach. Whatever they do with left over ashes is fine with me.

I know there will be people who say he is cold and should not do that to his mother. It's my wishes and it's written here for anyone who doubts that. He knows the second I die my soul will go to heaven and this is just a body it lived in, a dirty body with a horrible disease. He can have his own words with God, he doesn't need an audience to do that.

No I'm not ready to die yet. I hope this next round of drugs will make me feel better. But it's pretty clear today that I'm getting worse and now was the time to add this to my blog for him, for those who may want to judge him for my other son's who I've not talked about this with.

Remembering Glenn....

Today I started packing up the small things in my bedroom, starting with the jewelry box. When we moved to Texas a lot of items were packed into boxes without tossing or donating items I didn't use. The bottom drawer of the case held many tiny boxes I hadn't opened since I got sick and couldn't wear rings anymore.

I opened a box that held my son Mark's ring and a ring that had been given to him by my cousin Glenn. It took me back in time wondering why people were so cruel back then when it came to children who were not "perfect".

Glenn was a year older then I was. I didn't really know my family too well but Glenn was a cousin who I really liked even though we rarely saw each other. As the story goes, at birth they knew Glenn wasn't "right" because his head was large. The first time I remember being with him was when we were about 5 and 6 years old. He was twice the size of me, wore very thick glasses and talked very slow. That day we were allowed to hold a baby chick. When it was his turn, after many warnings from my aunt not to squeeze it, he held it for a long time with his hand open. Then he brought it to his lips to kiss it and forgot and closed his fingers on it and squeezed the life out of it. Every adult yelled at him, mean things. He crawled under the wooden porch and cried for hours with me along side of him.

Glenn never learned to read or write but he was much smarter then I was from listening to the radio all the time. Ask him anything about the world and he could give you a history lesson for hours. Glenn didn't seem to ever stop growing. His mother had to knit him mittens for a hunting trip in Canada. He always enjoyed his size. I remember him telling me to put both my feet into one mitten and see how big they still would be.

I don't know why Glenn was so happy all the time. His father refused to recognize him as a son and his mother suffered because she produced him. They hid him as much as possible until he was too old and just showed up when he wasn't suppose to.

My Uncle had Green houses and a roadside flower stand in the little mountain town they lived in. Glenn grew up to do much of the work, hauling dirt and tending to the coal heater fires in the winter to keep the plants warm. He did it always with a smile on. He spent most of his life alone except for a brother who adored him until his life was lost on the job at a very early age. After his mother died he took a lot of verbal abuse from his father.

Glenn had diabetis and no one cared to prepare meals for him that were healthy. He was not only huge but was way over weight. He had a lot of trouble with his feet, and wore shoes much too small for his feet. He heard an ad on the radio for a hospital in Philadelphia that did surgery on diabetic feet and was able to save people from the loss of toes.  I was living outside of Philadelphia at the time. He got another cousin to call me and ask if I would help him get to this hospital and have surgery before he ended up with no toes and unable to walk.

At the time my son Mark and I were living together. Glenn arrived on the bus, had the surgery and spent weeks in bed recovering at our place. He and Mark became very close. There was no subject Glenn couldn't talk about and Mark enjoyed every second of it. Before Glenn left, he insisted Mark keep his ring. I remember back when the ring was being made. After sending a strip that went around his finger to a jeweler in New York several times the fellow finally drove to the mountain town in disbelief of the ring size to measure the finger himself. I think Mark ended up with the ring because Glenn had found a friend who really was a friend. Mark adored him and hated knowing we were sending him back to live in a home where he wasn't loved but was used for his brute strength. Glenn didn't live to see age 50.

When I was packing up Mark's things after his death, I found the ring wrapped in a piece of velvet in Mark's treasure box. I remember adding Mark's own ring and putting it in this little box. I didn't get any packing done today. It was a good memory knowing that when I finally leave earth myself I not only will be out of pain but I'll be with the people I love and miss.

Here is Glenn's ring, Mark's ring and my ring:



The quarter is smaller then the ring



Be Careful what you wish for.....

or...If it looks too good to be true, it most likely is. These came to me early this morning when Dave arrived home from work.

Dave gets in around midnight. We usually sit and talk with a snack until he winds down from his day. This morning he came in the door and said, "I have good news and bad news".  The good news was he would have a lot of money each pay day. The bad news was the schedule he had been given...10 hour days, 12 days on 2 days off.

It took me right back to my early days in the Beauty business. I would open the beauty shop at 7:30 in the morning and close at 10:30 at night, 6 days a week. Some Saturdays I would open at 5:am because of an early morning wedding.

Dave's early years were spent in the beauty shop. I would bring him in for dinner until bedtime and almost all Saturdays. He often sat under a hair dryer pretending he was going to the moon. This is not a good way to raise a child and I was burnt out in just a few years.

All night, things like Union's and sweat shops went through my mind. Having only 4 days a month off is not a life. What good is thousands of dollars a month when you have no time to enjoy useing it....

The next 30 days will tell the story. Seventy some men went home last night with shattered dreams of a better life knowing that money will not always provide that. When earning it means living in the job. I'm worried. I saw a happy man go to bed broken.

Couldn't move without a mess

It's been a hard two weeks. I mostly stayed in bed or on the sofa. Late last night Dave walked into his bedroom and stepped onto a flooded carpet. I know all too well that water travels so before we settled down for the night, we had to move everything out of half the room and hope that was enough for the night.

It looked like the pipes to the tub were leaking so when the plumber came he cut out the wall in the bedroom. Nope, no leak, just lots of water under the tub. He decided the water was coming from the house connected to us. Upon examining the house next door, he found the air conditioner unit was frozen, had defrosted over and over and this was sending the water to our house. I'm wondering how the neighbor didn't notice the air conditioner wasn't working when it's been over 100 degree's for at least 2 weeks.

They sent in a fellow to suck up the water on the carpet and now it will take a few weeks for the area to dry before they can replace the wall.



Finally finished the French Braid, washed it and packed it for the move















I've decided to wait to do the Flower Quilt until after we move. There's just too much to do, too many trips to Pittsburgh and too much packing, not to forget we haven't had one day to look for another place yet.

Explaining Rheumatoid Arthritis

I've never tried to explain the disease because it's so different for everyone who has it. I've had people say, "oh I have that too", but having swollen hand joints is not RA. I'm going to try and explain it because recently many people have questioned me on what I have and why I can't just get it fixed.

They don't know what causes it and have no cure for it. They do have a ton of medicines to treat it because you can take one medicine for a time and one day it just stops working. RA does not only attack the bodies joints, it attacks the heart, eyes, lungs, kidney's and in many people it causes emotional problems, sometimes brought on by the disease and sometimes the medicines.

When the medicines fail they put you on Prednisone to get you back on track. This is an awful medicine but one that is a must for RA patients. Prednisone makes you shakey, you can't sleep, you are hungry all the time and it changes your personality. It hides the disease for a short time giving the doctors time to decide what to try next. Some people are on a maintenance dose of 5mg all the time. I have other diseases so I can only use it when there is nothing else working but it's usually at a high dose of 30 to 40 mg and I only take it for a short time. It makes me crazy, angry, miserable and I can't focus on anything. Trying to put a meal together becomes impossible because I can't remember from one minute to the next what I am doing.

I am on an injectable that up until six weeks ago, I injected once a week at a cost of $1500.00 a month. One morning I woke up an couldn't move, sit up, bend my legs or turn my neck. The pain, on a scale of 10, was 10. My RA doctor increased the injectable to twice a week at double the cost. It was a real fight to get the insurance company to pay their share. For the past month I've been pretty good again until last week. I didn't bother to call the doctor. He's in Pittsburgh and I'm here in Texas. I have an appointment with him on July 20th and at this point the meds need to be changed to another product. This is always hard because of my other disease's and the insurance company always gives me a hard time.

For now I'm living with both ankles, feet and wrists wrapped in elastic wraps, taking pain medicine, mostly laying in bed. I'm trying to endure the pain and not take the dreaded Prednisone. I don't want to be around me when I take it and I hate putting my son through it.

Even my RA doctor has asked me what the pain feels like. It's hard to discribe. When I move my arm it feels like the joint is exploding. I have the constant feeling of having the flu, chills, fever and full body ache's. My son has wrapped me up in every blanket in the house to try and stop the shakes but I'm not really cold, it's coming from somewhere inside. RA has damaged my kidney's, liver and recently my eyes. When I fall asleep in this kind of pain, I'm always surprised I'm still alive when I wake up.

Because I have liver damage and liver disease, I know my liver is dying. Doctor's today don't let you forget. If I complain about all the foods that make me sick, the doctor will remind me that it's from the bad liver and remind me that the liver cleans everything that goes into the body..and mine is no longer working. I don't know when it will kill me. I could dye from natural causes but just knowing I'm living on borrowed time is something I have to face everyday. Yep, there are days when I just have a good old fashioned crying towel party with myself. It never lasts long. I am glad to have today and I try not to worry about tomorrow.

I hope this helps to clear up Arithritis in the hands and the killer disease RA. When you have RA your life has been shortened by 5 to 7 years.

Checking in

Dave is on his second week of work. First week was training on what employee's need to know. The next 5 weeks will be training and certification. He can't tell me too much about his job but he does share the neat things.

According to him, the lunchroom has fabulous food at great prices. The Boeing compound is huge so to get around they have 3 wheel bikes with large baskets or for those who don't want to do the work themself, they have golf carts all over the place.

Anything that comes in video learning is done in the movie room where they also have an old fashioned popcorn machine..the kind on wheels with the handle the vender would push it around with. How cool is that!

All the newbies are on second shift for the training. That I was glad for since the Rheumatoid Arthritis decided to freeze my hands, shoulders and ankles. I was very happy when Dave left at 2:pm and I could just crawl back in bed and not have to push to look cheerful when the pain was taking every breath away.

Sunday I did manage to make a trip to a thrift store while Dave headed to the mall to buy slacks. I got a book for my trip to Pittsburgh in a few weeks and if I don't lock it away in my suitcase, I'll have it read.  I also found a few new packs of small projects for the fall and winter.

That's about it for today. I was on my way to get some ice packs for my wrists and decided I needed to check in...so it's back to bed, without the book this time!

Oh, and the move...seems there are 60 new employee's who are also looking for a place to live. Right now they are on short leases or renting rooms. One fellow from Austin rented a house but he's sleeping on the floor until his wife arrives with the furniture at the end of the month. Some of the fellows are from the space center in Florida. Seems like Dave is the only one who lives in San Antonio. As soon as things settle down, Dave is going to talk to the company resource person as this seems to be the place all the other fellows are getting their housing info from. I just hope I get a lot better in a hurry or he'll be on his own to pack up the rest of the house. I can't let that happen. Moving is one of the hardest jobs in life.