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.
Tuesday, June 7, 2011
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.
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.
Tuesday, May 31, 2011
First Day alone in 14 months
Gee, it feels so odd to be alone in the house! Dave and I often didn't see each other all day, but we did talk on Facebook and send emails...funny since we were only one room away from each other.
Today, Tuesday 31st, Dave started at Boeing. He was excited when he left at 5:am this morning. I know he'll have a great day. He won't be able to share anything he is doing but it's pretty easy to see when someone is happy with their job and themself.
The country is having awful weather, even northern Texas is getting awful storms. Here in San Antonio we have no water and we are restricted to a sprinkler on Monday's for 2 hour use. Of course that water has to be used to water the foundation of the house so it doesn't move off it's slab. First thing to do today was to hand water my flowers. Dave spent the last few days putting down kill for the fire ants. Since last weekend the center of the yard has split open.
The packing is going slow. You would think I would be use to it by now, but this time I'm hating it. Yep, I want to move where it's safe, but I'm tired of moving and this time it's not an adventure.
I also tried to sandwich the homespun French Braid Quilt. I might have to hand quilt this one. Homespun has a mind of it's own and the more you move it, the more it seems to grow. Just noticed the bags hanging on the tote. They are some herbs I'm drying.
The goal is to finish the French Braid and the Flower Quilt so they will be new for the move. I keep getting side tracked. I have to go to Pittsburgh this month so that will mean a shopping trip for a new outfit and shoes. I'll be passing a bead store and quilt shop to get to the mall...(side tracked)...I haven't bought any new fabric but I still like to look.
Today, Tuesday 31st, Dave started at Boeing. He was excited when he left at 5:am this morning. I know he'll have a great day. He won't be able to share anything he is doing but it's pretty easy to see when someone is happy with their job and themself.
The country is having awful weather, even northern Texas is getting awful storms. Here in San Antonio we have no water and we are restricted to a sprinkler on Monday's for 2 hour use. Of course that water has to be used to water the foundation of the house so it doesn't move off it's slab. First thing to do today was to hand water my flowers. Dave spent the last few days putting down kill for the fire ants. Since last weekend the center of the yard has split open.
The packing is going slow. You would think I would be use to it by now, but this time I'm hating it. Yep, I want to move where it's safe, but I'm tired of moving and this time it's not an adventure.
I also tried to sandwich the homespun French Braid Quilt. I might have to hand quilt this one. Homespun has a mind of it's own and the more you move it, the more it seems to grow. Just noticed the bags hanging on the tote. They are some herbs I'm drying.
Friday, May 20, 2011
Memory Quilt
Now that we are past the job search...Oh that looks so good to see in writing!.. I've had a week of no walking due to the RA attacking my ankles so I had to find some handwork to do. Digging into the tote with all the unfinished projects I found the Crazy Quilt I've been working on for, lets see...years! I was able to at least finish the binding before putting it back in the tote for another day.
The velvets in the quilt are all pieces cut from my granddaughter's Christmas dresses when they were toddlers or younger. There are also pieces from drapes, maybe 1940's, that I remember hanging in my grandmother's bedroom and a piece from a bureau scarf from her guest room. I used many of her things to put the top together, table cloth from Sunday dinner's, her apron and a piece from her bedspread. I must have only been 3 or 4 years old but remember that spread so well. It was shocking blue satin with a huge peacock in the center out lined in gold thread. Over time is lost it's luster from the sun and age but I cut a piece from the edge that must have been tucked behind the pillows.
I have a box of buttons and pins that were kept for me from grandmothers house that I am adding to the quilt. Her cameo from Italy and my Dad's USO pin. I think they called them sweetheart pins, pearls and my grandfather's watch fob will find it's way into the quilt. Old cotton lace and beads from broken necklaces.
Dave starts work on the 31st and then I can get back to his French Braid Quilt. When you haven't gone to work for over a year, you need to up date your clothing. So this week will be spent on shopping.
The velvets in the quilt are all pieces cut from my granddaughter's Christmas dresses when they were toddlers or younger. There are also pieces from drapes, maybe 1940's, that I remember hanging in my grandmother's bedroom and a piece from a bureau scarf from her guest room. I used many of her things to put the top together, table cloth from Sunday dinner's, her apron and a piece from her bedspread. I must have only been 3 or 4 years old but remember that spread so well. It was shocking blue satin with a huge peacock in the center out lined in gold thread. Over time is lost it's luster from the sun and age but I cut a piece from the edge that must have been tucked behind the pillows.
I have a box of buttons and pins that were kept for me from grandmothers house that I am adding to the quilt. Her cameo from Italy and my Dad's USO pin. I think they called them sweetheart pins, pearls and my grandfather's watch fob will find it's way into the quilt. Old cotton lace and beads from broken necklaces.
Dave starts work on the 31st and then I can get back to his French Braid Quilt. When you haven't gone to work for over a year, you need to up date your clothing. So this week will be spent on shopping.
Thursday, May 19, 2011
What's This ????
EMPLOYED!! THANKS BOEING, DEFENSE, SPACE and SECURITY!
"PRAISE GOD FROM WHOM ALL BLESSINGS COME"
 |
| What wings |
 |
| What style |
 |
| Great color |
 |
| A flight for everyone |
 |
| Even our Military |
EMPLOYED!! THANKS BOEING, DEFENSE, SPACE and SECURITY!
"PRAISE GOD FROM WHOM ALL BLESSINGS COME"
Friday, May 13, 2011
On the Home Front
What happened to the days when you found a job offer in the newspaper, went for the interview and were told, "Thanks for coming", or "This is what we are offering"? It's been weeks since Dave found the Job listed on the net, took all the tests, got the phone interview with 3 people...got a packet in the mail with an offer and instructions.
He took the offer that was not a firm offer until all the items listed were met. He passed the background check, security clearance, eye test/medical....and now....we wait again.
In the meantime the clock is ticking down on the last few weeks of unemployment and the stress is awful. He continues to spend 12 hours a day applying for jobs on line and praying he will be called...this is a job he really wants! It's really hard to have something you have dreamed about so close...and so far away.
As for me, I've been dealing with black clay Texas mud from our one and only rain storm. Darn dog keeps dragging it in and it sticks to the tile floors like cement.
I have also been working on the pillow project. I have one finished and one started, with 2 more cut out. Not sure about the flowers. They might end up on a smaller pillow. I might just use lace appliques but I packed those so it will be a real chore to find the right tote they are in. I guess I can always add them later.
He took the offer that was not a firm offer until all the items listed were met. He passed the background check, security clearance, eye test/medical....and now....we wait again.
In the meantime the clock is ticking down on the last few weeks of unemployment and the stress is awful. He continues to spend 12 hours a day applying for jobs on line and praying he will be called...this is a job he really wants! It's really hard to have something you have dreamed about so close...and so far away.
As for me, I've been dealing with black clay Texas mud from our one and only rain storm. Darn dog keeps dragging it in and it sticks to the tile floors like cement.
I have also been working on the pillow project. I have one finished and one started, with 2 more cut out. Not sure about the flowers. They might end up on a smaller pillow. I might just use lace appliques but I packed those so it will be a real chore to find the right tote they are in. I guess I can always add them later.
 |
| ruffle on soft chenelle |
Friday, May 6, 2011
New pillow project
I've been having eye issue's for the past year. Today while shopping at JoAnn's Fabric I spotted Ott lights in the discount area. Rarely do I spend money on myself but I thought the clear light these lamps give might help me to continue to sew, so I bought one! I only took a few minutes to try it out but it's really fantastic! With my new glasses and the light I can actually see the stitches again. I hate to admit it, but I've been guessing at where I've been sewing.
I also picked up some fabric's to make pillow covers to go with my new Flower Quilt that I am working on. Thanks to my friend Kathy, I will have a special pillow! She embroidered a B and a bee and was kind enough to send it to me.
I also picked up some fabric's to make pillow covers to go with my new Flower Quilt that I am working on. Thanks to my friend Kathy, I will have a special pillow! She embroidered a B and a bee and was kind enough to send it to me.
Subscribe to:
Posts (Atom)