It has been too long for me not to see my mom. its been 6 months today, 27 weeks, 181 days since I last saw you. I miss you like crazy. My life with out my mom is just so lonely no one to call and hear her voice, no number to call her, and no one to answer my questions about cooking. (okay there are people i can call about that but not my mommy. I've been reading this book and i used to take everything I have and had for granted but now reading what she went threw i cant take anything for granted its a wonderfull book just to know what was going through her mind when she got abducted.
I've been trying to get back into quilting but its super hard because my mom and i used to do it together and thats the super hard part. My mom is still my best friend and will always be my best friend. I never knew i would be nineteen with out my mom so anyone who is reading this if you lost a loved one that you were really close to please comment me and tell me how you guys made it through i feel like my whole life went away because she went away. Im not as happy as i used to i cry alot and im tired trying to keep my mind busy where i dont think about my mom.
Tuesday, July 19, 2011
Friday, April 15, 2011
Hi everybody again that reads my moms blog.
Hi if you dont know who i am im chris' daughter Lindsey. Im going to keep writing on here so if you read this please tell me because i feel like no one reads our blog. So I'm Lindsey, im 19 years old, and my 2nd year at my college I go to a community college thats close to our house and my mom passed away in January. So the day my mom got in the hospital and the day my mom passed away and went to paradise still haunts me every minute of every day. My relationship with my mom wasn't normal. I thought it was normal but when I saw my friends with their mom's they weren't as close as my mom and I. We took a bunch of cool trips that I loved we went to Hawaii, Mexico, Canada, and New York! But my mom went to London and Ireland with her girlfriends. When they went I was in middle school and I wanted to go with them but I wasn't allowed to so when she was there I was super mad at her. But the last trip my mom and I got to go on was to disneyland. My mom and I did the disney day so we got free tickets YES I SAID FREE!!!! we just had to help out Habitat for Humanity for a few hours. We went to disneyland with my best friend Jorden and her mom Lisel! We had the bestest of best time with each other. When we went to disneyland it was my first time going on a roller coaster.
When i live my life its day to day i dont take anything for granted anymore. I always thought to myself my mom and dad are always going to be there no matter what. Now I think to myself before my dad goes away for work. "Is this going to be the last time I see my dad stable?" Yeah you might be laughing but for what I have gone thru Its hard to stay positive. All my friends tell me all the time I hate my parents but I say I said that about my mom when I was little but they turn out to be your best friend. And now look how much I regret saying all i said to my mom about how she was a bad mom and alot of other things. But now I miss her greatly and she was the best mom because she was my MOMMY! And she raised me into a beautiful young woman mommy you did your job the best with me.
I love my mom alot and i miss her greatly.
-Lindsey <3
When i live my life its day to day i dont take anything for granted anymore. I always thought to myself my mom and dad are always going to be there no matter what. Now I think to myself before my dad goes away for work. "Is this going to be the last time I see my dad stable?" Yeah you might be laughing but for what I have gone thru Its hard to stay positive. All my friends tell me all the time I hate my parents but I say I said that about my mom when I was little but they turn out to be your best friend. And now look how much I regret saying all i said to my mom about how she was a bad mom and alot of other things. But now I miss her greatly and she was the best mom because she was my MOMMY! And she raised me into a beautiful young woman mommy you did your job the best with me.
I love my mom alot and i miss her greatly.
-Lindsey <3
Wednesday, February 9, 2011
Hi everybody its Christine's daughter Lindsey
Hi everbody! It's Chrsitine's daughter Lindsey. I'm sorry to tell all of you this but my mom passed away on January 19th, 2011 at 8:00pm. She suffered from a disease called IPF idiopathic pulmonary fibrosis its scaring of the lungs, and she also had phnumonia. Before everything happend my mom, my best friend, and my bestfriends mom and I went to disneyland. My mom and I did the disney day so we got in free. It was so much fun my mom paid me $5 to go on space mountain. This was my first time going on a roller coaster but the first one we went on that day was the matterhorn. We had a blast. Then my mom started to feel sick when we got back from disneyland. The a couple days later we went to the drs. and they diagnosed her with phnumonia. They started her on the highest doseage of antibiotics they can give to be at home. Then after 2 days of being on the medicine, she passed out at home. From December 16th to January 19th she's been in the hospital. Her oxygen wasn't holding its self. Because when she got phnumonia it made the IPF flair up. They had her on a bipap machine its when air is pushing against you making you breathe it in. Then they moved to life support. They took the life support out on the 19th. And she lasted for 4 hours on 100% oxygen. She was sad to leave all of us on earth. But shes waiting for all of us to meet her there.
And im trying to create an organization to raise money to find a cure of IPF someday. That was moms dream.
Thank you,
Lindsey
And im trying to create an organization to raise money to find a cure of IPF someday. That was moms dream.
Thank you,
Lindsey
Saturday, October 23, 2010
WOW How time flies!
I knew it had been a while since I posted anything here. 10 months! Not a lot has changed. My health is still stable. I go back for a another pulmonary function test next month. I am still trying my best to stay positive and have a good attitude. My new slogan is "Find the Sugar!" I'll explain if you're interested.
I still don't have any pictures on my blog because I haven't taken the time to learn how to post them. I don't have a great camera anyway.
I'm going thrift shopping this afternoon. I hope I can find something wonderful. I don't want or need anything specific, but it's still fun to see what "treasure" I uncover.
See you later.
I still don't have any pictures on my blog because I haven't taken the time to learn how to post them. I don't have a great camera anyway.
I'm going thrift shopping this afternoon. I hope I can find something wonderful. I don't want or need anything specific, but it's still fun to see what "treasure" I uncover.
See you later.
Thursday, January 14, 2010
I am not a good blogger! It's been a month again, since I've posted anything and I haven't even tried to add any photos. Of course, if nobody reads it but me, then who cares?
I had a nice Christmas. I hope you did too.
I have been painting and redocorating my kitchen. The color is called Coffee. It looks more like coffee with a lot of cream. Then the accent color will be red, and the "theme" is coffee. I have some great fabric with the perfect colors to make a wall hanging. I also found the perfect kitchen towels at Walmart of all places! Kmart had perfect glass jars with red lids, and taget had a perfect shade of red dinnerware. And the dishes were on sale, only $22.00 for a 16 piece service for 4. Well there are only 4 on our family, but that would never do. I bought 3 sets and I'm thinking of buying one more set because when a few items get broken they won;t be available anymore. You can tell I'm excited about my kitchen decor. What started all this? I got a brand new Whirlpool Duet Washer and Dryer complete with the pedestals for Christmas from my Mother and Father-in-law. They said they wanted me to pick out what I wanted and I picked the red ones. They are beautiful! I walk by them and admire them at least twice a day. I bet I haven't washed more than 3 loads of clothes yet. The kids like them so much they've been doing the laundry! That's fine with me!
Well, the first month of the year is almost half gone already. I think this is going to be a much better year than last year. Last year is done, let's not go back there OK? OK.
Maybe I can actually get some photos and post them. That might make my blog a bit more interesting.
Happy New Year.
I had a nice Christmas. I hope you did too.
I have been painting and redocorating my kitchen. The color is called Coffee. It looks more like coffee with a lot of cream. Then the accent color will be red, and the "theme" is coffee. I have some great fabric with the perfect colors to make a wall hanging. I also found the perfect kitchen towels at Walmart of all places! Kmart had perfect glass jars with red lids, and taget had a perfect shade of red dinnerware. And the dishes were on sale, only $22.00 for a 16 piece service for 4. Well there are only 4 on our family, but that would never do. I bought 3 sets and I'm thinking of buying one more set because when a few items get broken they won;t be available anymore. You can tell I'm excited about my kitchen decor. What started all this? I got a brand new Whirlpool Duet Washer and Dryer complete with the pedestals for Christmas from my Mother and Father-in-law. They said they wanted me to pick out what I wanted and I picked the red ones. They are beautiful! I walk by them and admire them at least twice a day. I bet I haven't washed more than 3 loads of clothes yet. The kids like them so much they've been doing the laundry! That's fine with me!
Well, the first month of the year is almost half gone already. I think this is going to be a much better year than last year. Last year is done, let's not go back there OK? OK.
Maybe I can actually get some photos and post them. That might make my blog a bit more interesting.
Happy New Year.
Sunday, December 13, 2009
Catch up
I figured I'd do a little catch up. The last time I posted, my husband had just been informed he would no longer be working for the auction where he usually gets most of his work, and should pick up his final check on Monday. It was a depressing weekend even though it was Thanksgiving. Later in the week things were cleared up and he was welcomed back. It was all a big misunderstanding. So things are good again. I was beginning to think I was going to need to double up on the Prozac.
I had a repeat CT scan and my lungs don't show a change from last March. That's good news. There is a new drug coming through the FDA right now that should be available in Spring 2010. It is supposed to stop scarring. My problem (IPF) is scarring in the lungs, so if this new drug works for me it will literally be my lifesaver.
I have done almost no Christmas shopping or decorating. I better get moving!
I had a repeat CT scan and my lungs don't show a change from last March. That's good news. There is a new drug coming through the FDA right now that should be available in Spring 2010. It is supposed to stop scarring. My problem (IPF) is scarring in the lungs, so if this new drug works for me it will literally be my lifesaver.
I have done almost no Christmas shopping or decorating. I better get moving!
Sunday, November 29, 2009
Sunday, September 20, 2009
_ _ _ Not much new here
The new range and dishwasher have been in for over a week now. My daughter and I both wanted to cook the first meal on the stove. Being the nice person that I am I let her cook. Darn! I wish she wanted to cook every night. It really is nice to have a beautiful new stove and because it has a glass/ceramic smooth top it is so easy to keep clean. Even at the top where there are usually knobs, it is smooth. No knobs to clean around. Just a pad with numbers to press. I love it. Of course I don't want to cook anything and mess it up. The brand happens to be LG which is the same brand as the dishwasher and my refrigerator so they all match. My microwave is some other brand so the stainless steel is a little different, but not enough to matter. Well this post is not very interesting. Is it!
I finally finished a small wall quilt that I started quite a while back. It's a gift so I'll take a picture of it before I send it away, and post it when I figure out how. I haven't really tried to figure it out yet. I really should do that. I've also gotten all my blocks of the month caught up. I had to do 2 months of one, and 3 months of my Thimbleberries blocks. I hope I can stay caught up now.
I hope your life is more intersting than mine. I love read about yours'.
I finally finished a small wall quilt that I started quite a while back. It's a gift so I'll take a picture of it before I send it away, and post it when I figure out how. I haven't really tried to figure it out yet. I really should do that. I've also gotten all my blocks of the month caught up. I had to do 2 months of one, and 3 months of my Thimbleberries blocks. I hope I can stay caught up now.
I hope your life is more intersting than mine. I love read about yours'.
Monday, September 7, 2009
_ _ New appliances coming
We bought our house almost 19 years ago, and all the appliances except the refrgerator were brand new. Now all the appliances are crapping out at the same time. We've replaced the dishwasher but we need a new one again. I got a new refrigerator last year, and yesterday I bought a new range and dishwasher. Now I need to clean my kitchen and house so I can have my friends come over and see my new appliances! OK, not much going on in my life if this is the most exciting thing happening. But that's not a bad thing! My health is good, and I have much to thank God for.
Friday, August 28, 2009
_ _ _ _ _ _ Health Update
I went last week for another Pulmonary Function Test. I saw my doctor yesterday and she repeated the stair walking test. Everything is the same, so my health is not declining. My doctor said I am STABLE. Of course, my husband says the doctor was talking physically, not mentally.
She also said there is a new drug for people with Interstitial Lung Disease, that is making it's way through the FDA approvals now. It is supposed to prevent scarring. She said it should be released early next year. Since there is no current treatment, for ILD the FDA will most likely push it through. I think this is great news.
My daughter got her learner's permit yesterday, but we're going to make her take lessons with a driving school before she drives our cars. I almost had a heart attack several times when I taught our son to drive, and I don't think I can survive it a second time. My husband says she can wreck the driving school car, not ours. Well I have to agree with that.
She also said there is a new drug for people with Interstitial Lung Disease, that is making it's way through the FDA approvals now. It is supposed to prevent scarring. She said it should be released early next year. Since there is no current treatment, for ILD the FDA will most likely push it through. I think this is great news.
My daughter got her learner's permit yesterday, but we're going to make her take lessons with a driving school before she drives our cars. I almost had a heart attack several times when I taught our son to drive, and I don't think I can survive it a second time. My husband says she can wreck the driving school car, not ours. Well I have to agree with that.
_______ A Great Vacation
We had a great time on our vacation. The cruise was great. There was a big water slide and us 2 fifty plus year olds had as much fun as the kids. Of course, like all cruises, the food was wonderful. St. John, Nova Scotia and Halifax, New Brunswick were beautiful, friendly cities. The weather was awesome! Lots of history there!
Then it was hot and humid in NY but we were expecting it. The three of us saw quite a few of the main New York sites. We used a taxi once, and the rest of the time we used the subway system and walked to get around. We did a lot of walking! I managed not to gain any weight! That's how much walking we did! I was surprised at how few of the subway stations had elevators or escalators. We had to drag our suitcases up and down quite a few stairs. A few times a good samaritan helped. We stayed 2 nights in Soho, and 3 nights in Times Square. The first stop in our NY adventure was The City Quilter. Then before we left, we made another stop there. We went to Central Park, Grand Central Station, The Metropolitan Museum of Art, The Statue of Liberty, Ellis Island, NBC Studios, Top of the Rock, New York Skyride, the Empire State Building, Dylan's Candy Bar, Times Square, World Trade Center Tribute Museum, saw a play at the Helen Hayes Theatre. We ate Pretzels and hot dogs from the street vendors, ate at Roxy's Deli, Papaya Dogs, White Castle Burgers, and the New York Hard Rock Cafe.
We had a wonderful time and if I ever take the time to figure it out, I'll post some pictures.
Then it was hot and humid in NY but we were expecting it. The three of us saw quite a few of the main New York sites. We used a taxi once, and the rest of the time we used the subway system and walked to get around. We did a lot of walking! I managed not to gain any weight! That's how much walking we did! I was surprised at how few of the subway stations had elevators or escalators. We had to drag our suitcases up and down quite a few stairs. A few times a good samaritan helped. We stayed 2 nights in Soho, and 3 nights in Times Square. The first stop in our NY adventure was The City Quilter. Then before we left, we made another stop there. We went to Central Park, Grand Central Station, The Metropolitan Museum of Art, The Statue of Liberty, Ellis Island, NBC Studios, Top of the Rock, New York Skyride, the Empire State Building, Dylan's Candy Bar, Times Square, World Trade Center Tribute Museum, saw a play at the Helen Hayes Theatre. We ate Pretzels and hot dogs from the street vendors, ate at Roxy's Deli, Papaya Dogs, White Castle Burgers, and the New York Hard Rock Cafe.
We had a wonderful time and if I ever take the time to figure it out, I'll post some pictures.
Sunday, July 26, 2009
Let's go! NY here we come!
This is my last post before our New York/Canada trip. Can't wait! Well I guess I can wait, because I'm certainly not ready to go. I have started packing a little, and I didn't want to spend money on new clothes, but I think I need some. I don't want to walk around looking all frumpy. I have my standard packing list that I use everytime I go on vacation. It's on my computer and I just tweak it each time, depending on destination and expected weather. Then I print it out, and share it with who ever is going on the trip.
My friend Jan at work gave me a zippered bag full of all kinds of travel size stuff! Qtips, bandaids, tissues, lotions, etc.etc. Not sure I fit all of it in the suitcase! She is such a thoghtful lady. I love her. In fact all the "girls" I work with are total dolls. We are all close to the same age, and all experience the same menopausal symptoms. We all have hot flashes, (personal summers, or my inner child playing with matches) and we all suffer from CRS (can't remember shit). It is a pleasure to go to work everyday with these women. I am truly blessed. I need to work another 2 1/2 years before I can think of retiring and it really makes it easy to go to work when you enjoy your job and the people you work with.
We'll fly out Friday night 7/31 on Jet Blue. Then get on our Carnival Cruise to Canada for 5 nights, then back to NYC for 5 nights. Then we fly back on 8/11 and rest and unpack on the 12th, then back to work on the 13th. Well, lets not talk about back to work right now.
I will take a lot of pictures, so I better study up on how to post a photo!
Have a good 2 weeks! I know I will! Chris
My friend Jan at work gave me a zippered bag full of all kinds of travel size stuff! Qtips, bandaids, tissues, lotions, etc.etc. Not sure I fit all of it in the suitcase! She is such a thoghtful lady. I love her. In fact all the "girls" I work with are total dolls. We are all close to the same age, and all experience the same menopausal symptoms. We all have hot flashes, (personal summers, or my inner child playing with matches) and we all suffer from CRS (can't remember shit). It is a pleasure to go to work everyday with these women. I am truly blessed. I need to work another 2 1/2 years before I can think of retiring and it really makes it easy to go to work when you enjoy your job and the people you work with.
We'll fly out Friday night 7/31 on Jet Blue. Then get on our Carnival Cruise to Canada for 5 nights, then back to NYC for 5 nights. Then we fly back on 8/11 and rest and unpack on the 12th, then back to work on the 13th. Well, lets not talk about back to work right now.
I will take a lot of pictures, so I better study up on how to post a photo!
Have a good 2 weeks! I know I will! Chris
Friday, July 17, 2009
"Live your life, not your disease"
One of the researchers at work has tried to talk to me twice now about my "illness". Poor guy, everytime he talks to me, I get teary eyed and he feels bad. He told me he was diagnosed 2 1/2 years ago with a very agressive case of Prostate cancer. His oncologist told him, "Live your life, Not your disease". Well, that sounds like a great idea to me. I may live 2 years, 5 years, or 10 years, but I'm going to try my best to live my life, and be healthy.
Friday, July 3, 2009
Still no pictures
Well I still haven't taken the time to figure out how to post pictures so my blog is still pretty boring. Nobody reads it anyway so It's OK.
I can't wait for our vacation. We have our airfare reserved, our cruise has been reserved for some time now. We booked the hotels last weekend. 2 nights in lower Manhattan and 3 nights in Times Square. And I ordered new York City Passes, and they came in the mail yesterday. With the pass you get into about 50 attractions free. And some of them you can skip to the front of the line. Now we're listing all the things we want to see and figuring the route to take. I suppose we'll do most of it by subway. Just can't wait!
If you read my little blog, please leave a comment.
I can't wait for our vacation. We have our airfare reserved, our cruise has been reserved for some time now. We booked the hotels last weekend. 2 nights in lower Manhattan and 3 nights in Times Square. And I ordered new York City Passes, and they came in the mail yesterday. With the pass you get into about 50 attractions free. And some of them you can skip to the front of the line. Now we're listing all the things we want to see and figuring the route to take. I suppose we'll do most of it by subway. Just can't wait!
If you read my little blog, please leave a comment.
Saturday, June 20, 2009
Planning a trip!
My friend Lori, my daughter, and I are planning a trip to New York! It's nothing like planning a trip to lift the spirits! We're leaving July 31st on the redeye to JFK airport. We'll get there in the morning, then in the afternoon, we'll board the Carnival Triumph for a New England/Canada cruise for 5 nights. Then when we return to NY City, we'll do the NY touristy thing. We will also have to visit a quilt shop. Believe it or not, we went to a quilt shop outside of London,and we went to a fabric store in Dublin, so I know we'll have to find a quilt shop in NYC!
My daughter is really excited. She's always wanted to go to NY. I'm so proud of her. She decided all on her own, that she didn't want to sit around for the summer being bored. She signed up for an ROP class, and is volunteering at a hospital 6 hours a day. She seems to be really enjoying it.
My daughter is really excited. She's always wanted to go to NY. I'm so proud of her. She decided all on her own, that she didn't want to sit around for the summer being bored. She signed up for an ROP class, and is volunteering at a hospital 6 hours a day. She seems to be really enjoying it.
Saturday, June 13, 2009
Positive thinking
OK, I've spent enough time feeling sorry for myself. I am now ready to get on with my life. I am determined to get healthier. I don't know exactly what to do, but I know good nutrition, excersize and good attitude will go a long way. I am sad I may not live a long life, but I'm thankful for the 57 years I've had, and I'm sure I'll have a few more years anyway. I don't know if I'll be able to continue to donate blood to the blood bank. I am getting close to my goal of 10 gallons. I hope I can still make it. And leaving my husband and kids are the unthinkable part. I try to put that out of my mind. It just makes me too sad.
I've been trying to de-clutter the house a bit, and it's worse than ever now. I wish I had a Goodwill store right next door so the items could be sent out at the very moment I decide to part with them. I have a pile of clothes in a corner of my bedroom to go to Goodwill. Then I think "Maybe so and so would like this and maybe so and so would like that." Now I have to go thru it all again, and separate everything again. But I love my friends and if they would like any of my stuff, I want them to have first choise, then the rest will go to Goodwill. So that's what I'll be working on today. See you later. Have a good day.
Remember - Positive thinking!
I've been trying to de-clutter the house a bit, and it's worse than ever now. I wish I had a Goodwill store right next door so the items could be sent out at the very moment I decide to part with them. I have a pile of clothes in a corner of my bedroom to go to Goodwill. Then I think "Maybe so and so would like this and maybe so and so would like that." Now I have to go thru it all again, and separate everything again. But I love my friends and if they would like any of my stuff, I want them to have first choise, then the rest will go to Goodwill. So that's what I'll be working on today. See you later. Have a good day.
Remember - Positive thinking!
Thursday, June 4, 2009
The results from my Lung Biopsy
Here it is in a nutshell. Research has shown that an individual’s mental attitude can add to or detract from their longevity. So, I will try to keep an optimistic outlook. I’ve had chest x-rays, CT scan, Pulmonary Function Test, Bronchoscopy, and now Lung Biopsy so I am pretty confident in the diagnosis.
I got a detailed paper from my doctor and I am summarizing information from the paper to be able to explain this to you, and to help myself understand more.
I have Pulmonary Fibrosis (PF). Literally it means lung (pulmonary) scarring (fibrosis). Mine is called Usual Interstitial Pneumonia (UIP). When the cause is not known it is called Idiopathic Pulmonary Fibrosis (IPF). The cause is unknown and there is no cure. It is estimated that 50,000 new cases are diagnosed annually. More that 200,000 people in the US suffer from the disease. There are at least 5,000,000 cases world wide. At least 45,000 die from this disease each year. A history of smoking has been associated with an increased risk of IPF. (I quit 23 years ago.) People in NYC are at greater risk due to the toxins released as a result of the twin towers in 9/11/01.
Symptoms are breathlessness and a dry hacking cough. The course of PF varies from person to person. It may progress slowly and gradually over years, or may progress rapidly. The course is generally unpredictable.
The interstitium is the tissue in the lungs between air sacs. When scarring occurs the tissue becomes thicker and the lung becomes stiff, making it more difficult for oxygen to get into the bloodstream. Scar tissue cannot be removed surgically or with medication.
For approximately 20% of population with PF, medications such as Cortisones will stabilize the disease, but there are side affects. There are anticancer drugs used for immune suppression, but there are more side affects. Other drugs have been used with variable results, or with unconfirmed effectiveness. Some people may require supplemental oxygen. So far, my oxygen levels are normal. I will be getting information on exercise training, breathing exercises, nutritional counseling, stress and depression management. The average survival rate is roughly 3 – 6 years following onset of symptoms. The overall survival rate for IPF is up to 18 years. Many new developments of effective treatments will lead to increased survival time and a better quality of life. Developing and maintaining a positive attitude will increase survival time for everyone. I told my pulmonologist that if I am going to die within 2 years I want to retire and go to Hawaii. She said no, don’t retire. But still go to Hawaii! Live my life as normally as possible. I am not telling my mom. I don’t want her to worry. She has enough to worry about.
My doctor is referring me to a study at UC Davis that will begin in July. There have not been any new studies for 2 years at UCD so this will be good timing for me. She told me there are promising results from an over-the-counter vitamin supplement that might help also. I need to wait to talk to the people doing the study to see if I can take the vitamin also.
I am feeling good. I don’t think my shortness of breath is very worrisome. I only have pain from the lung biopsy. I saw my surgeon today and he explained that they spread the ribs to get the instruments in to the lungs. My ribs are bruised and that’s why I have pain. I will be returning to work on Monday. I may only work ½ days for a while depending on how I am feeling. Thank you for your support and love.
Chris
“I am still determined to be cheerful and happy, in whatever situation I may be; for I have learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon or circumstances.” – Martha Washington
A strong positive mental attitude will create more miracles that any wonder drug.: - Patricia Neal
“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.” – Dale Carnegie
I got a detailed paper from my doctor and I am summarizing information from the paper to be able to explain this to you, and to help myself understand more.
I have Pulmonary Fibrosis (PF). Literally it means lung (pulmonary) scarring (fibrosis). Mine is called Usual Interstitial Pneumonia (UIP). When the cause is not known it is called Idiopathic Pulmonary Fibrosis (IPF). The cause is unknown and there is no cure. It is estimated that 50,000 new cases are diagnosed annually. More that 200,000 people in the US suffer from the disease. There are at least 5,000,000 cases world wide. At least 45,000 die from this disease each year. A history of smoking has been associated with an increased risk of IPF. (I quit 23 years ago.) People in NYC are at greater risk due to the toxins released as a result of the twin towers in 9/11/01.
Symptoms are breathlessness and a dry hacking cough. The course of PF varies from person to person. It may progress slowly and gradually over years, or may progress rapidly. The course is generally unpredictable.
The interstitium is the tissue in the lungs between air sacs. When scarring occurs the tissue becomes thicker and the lung becomes stiff, making it more difficult for oxygen to get into the bloodstream. Scar tissue cannot be removed surgically or with medication.
For approximately 20% of population with PF, medications such as Cortisones will stabilize the disease, but there are side affects. There are anticancer drugs used for immune suppression, but there are more side affects. Other drugs have been used with variable results, or with unconfirmed effectiveness. Some people may require supplemental oxygen. So far, my oxygen levels are normal. I will be getting information on exercise training, breathing exercises, nutritional counseling, stress and depression management. The average survival rate is roughly 3 – 6 years following onset of symptoms. The overall survival rate for IPF is up to 18 years. Many new developments of effective treatments will lead to increased survival time and a better quality of life. Developing and maintaining a positive attitude will increase survival time for everyone. I told my pulmonologist that if I am going to die within 2 years I want to retire and go to Hawaii. She said no, don’t retire. But still go to Hawaii! Live my life as normally as possible. I am not telling my mom. I don’t want her to worry. She has enough to worry about.
My doctor is referring me to a study at UC Davis that will begin in July. There have not been any new studies for 2 years at UCD so this will be good timing for me. She told me there are promising results from an over-the-counter vitamin supplement that might help also. I need to wait to talk to the people doing the study to see if I can take the vitamin also.
I am feeling good. I don’t think my shortness of breath is very worrisome. I only have pain from the lung biopsy. I saw my surgeon today and he explained that they spread the ribs to get the instruments in to the lungs. My ribs are bruised and that’s why I have pain. I will be returning to work on Monday. I may only work ½ days for a while depending on how I am feeling. Thank you for your support and love.
Chris
“I am still determined to be cheerful and happy, in whatever situation I may be; for I have learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon or circumstances.” – Martha Washington
A strong positive mental attitude will create more miracles that any wonder drug.: - Patricia Neal
“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.” – Dale Carnegie
Thursday, May 28, 2009
still recovering
Wow I didn't know I'd still be taking pain killers pretty regularly by this time. I am just so sore. I'm still recovering I guess. I was hoping I'd feel good enough to clean out some closets and clean up my office area and quilting area. The desk top where the sewing machine belongs has a big pile of scrap fabrics and recently purchased fabrics. I had to get my son to take the sewing machine to the kitchen so I could do my block of the month that I have to have done by Saturday. I got it done, but it took me a few hours. I had to sit and rest and took a nap in the middle of one block! I hope I'll feel better soon.
Saturday, May 23, 2009
Lung Biopsy done!
The last time I updated, I was getting ready for a trip with my friends to Reno. We had a wonderful time. The show "Menopause" was great. If you get a chance to see it, DO!
We went to a quilt shop I had been to but my friends hadn't been there. It was called Going Batty quilt shop in Reno. My friends liked it and we'llo all be going back again. Then we went to a shop where my friends had been but I hadn't been to before, in Gardnerville, Nevada. The Quilt House. Wow what a terrific shop! This shop is permanently on the Return To list.
Last Monday the 18th, I went to the hospital for my lung biopsy. I expected to come home the following day, or on Wednesday, but I didn't make it home until Friday. My hubby could only come to visit twice in 4 days, my son didn't come at all. He didn't even call. My daughter took the bus with her girlfriend, after school, everyday to the hospital to see me. Isn't that sweet, just a like a daughter! She didn't want to be at home alone so she stayed with her girlfriend at night. Her girlfriend's mother picked them up on her way home from work. My daughter brought me balloons and a coworker sent flowers and a teddy bear. Another friend sent home a complete spaghetti dinner for the family and me to enjoy, and another friend gave me a new book, a candle, and really nice body lotion. I don't know why I deserve such good friends, but I love them.
I looked at my favorites blogs Monday morning and couldn't wait to get home to read them. I finally had a good night's sleep last night. It is so annoying to not sleep well at night and then they have to wake you up every few minutes to take your blood pressure, oxygen level, etc. They even woke me to ask about my pain. I don't think I would be sleeping if I was in too much pain. I am usually pretty easy to get along with, but I don't know why the night nurses are so noisy! They talk and laugh all night long and allow the bells and alarms to ring and ring and ring! I wanted to get up and answer the bells and alarms myself. Now I have to recover for a week or so before I can go back to work, and wait 2 weeks for results from the biopsies they took. My only fear is that they won't be able to determine any cause for my lung disease and I will have gone thru this biopsy for nothing. The bandage comes off tomorrow and I can see what the sopt looks like where the chest tube was in my back. You're probably glad I haven't figured out how to add pictures yet! Right?
We went to a quilt shop I had been to but my friends hadn't been there. It was called Going Batty quilt shop in Reno. My friends liked it and we'llo all be going back again. Then we went to a shop where my friends had been but I hadn't been to before, in Gardnerville, Nevada. The Quilt House. Wow what a terrific shop! This shop is permanently on the Return To list.
Last Monday the 18th, I went to the hospital for my lung biopsy. I expected to come home the following day, or on Wednesday, but I didn't make it home until Friday. My hubby could only come to visit twice in 4 days, my son didn't come at all. He didn't even call. My daughter took the bus with her girlfriend, after school, everyday to the hospital to see me. Isn't that sweet, just a like a daughter! She didn't want to be at home alone so she stayed with her girlfriend at night. Her girlfriend's mother picked them up on her way home from work. My daughter brought me balloons and a coworker sent flowers and a teddy bear. Another friend sent home a complete spaghetti dinner for the family and me to enjoy, and another friend gave me a new book, a candle, and really nice body lotion. I don't know why I deserve such good friends, but I love them.
I looked at my favorites blogs Monday morning and couldn't wait to get home to read them. I finally had a good night's sleep last night. It is so annoying to not sleep well at night and then they have to wake you up every few minutes to take your blood pressure, oxygen level, etc. They even woke me to ask about my pain. I don't think I would be sleeping if I was in too much pain. I am usually pretty easy to get along with, but I don't know why the night nurses are so noisy! They talk and laugh all night long and allow the bells and alarms to ring and ring and ring! I wanted to get up and answer the bells and alarms myself. Now I have to recover for a week or so before I can go back to work, and wait 2 weeks for results from the biopsies they took. My only fear is that they won't be able to determine any cause for my lung disease and I will have gone thru this biopsy for nothing. The bandage comes off tomorrow and I can see what the sopt looks like where the chest tube was in my back. You're probably glad I haven't figured out how to add pictures yet! Right?
Saturday, May 2, 2009
Busy day today
Today will be a busy day. I need to run the car through the car wash, do some shopping, some house cleaning and spend some time with my daughter. Early tomorrow morning my friends and I are going to Reno to see a show. The show is called 'Menopause'. My boss lady saw it and told me how funny it is and that I should go with my friends. So we've ordered tickets and booked 2 rooms at the El Dorado. I can't wait! it will be so much fun!
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