Did you like the previous post? I just had to do it. Who knew there were letters like that? If anyone can figure it out you get the prize!! Yes it really says something.:)
Ok, so today I woke up and decided I'd take charge of the situation. I will not be the scaredy girl. I feel great, back to normal. Maybe I had a virus that messed up my already precarious veins. Anyway, I've picked up the house, vacuumed, did two loads of laundry, email, bills, filing, went to CVS and the grocery store, unloaded and put away groceries and now I'm resting a bit.
I'm wearing my dorky, I've fallen down but I can't get up necklace. I'm doing extra breathing treatments and I will not bleed again! Guess that is a little contradictory, if I really believed that I wouldn't wear the necklace! But I figure anything that will make my head feel better is good. So I've decided that dorky is the in thing...don't you wish you were as cool as I am? heee heee. Ok, so you can run and I can't....tough, I have the stomach muscles of ...well, ....of a CF person who coughs a lot.
Now I'm off to go read for a while before hunny gets home. He had to work today. Was supposed to yesterday, but he stayed with me while we were both on pins and needles. Dinner, hmmm, what for dinner? Anyone?
Sunday, August 20, 2006
Friday, August 18, 2006
P.S.
10:30pm, another bleed. The 4th for today. Larger than the first 3, but not what they would call large. Long...took a while to stop. After a couple of minutes, I got Kelly up to wait with me. Was that wise? Should I call the doc? Should I go out to Orange? Should I sit and wait to see if there are more? What if there are, what then? Can I safely lay down and go to sleep? I'm so nervous.
These aren't the "I'm gonna die" kind. But 4? How big are they going to get?
Deep breath. Just relax. Wait and see. Worry. Hope. Cry. Alone.
I don't want to play any more.
These aren't the "I'm gonna die" kind. But 4? How big are they going to get?
Deep breath. Just relax. Wait and see. Worry. Hope. Cry. Alone.
I don't want to play any more.
starting with the good stuff
Well, I thought I'd write all the happy stuff here. The fun, the good, the cool...
Ok, our weekend went great. I amazed myself by not thinking about bleeding in the middle of the desert until an hour into the trip. Only 3 more to go....But there were no incidents, no problems. Our little prius got 50 miles per gallon. Not bad with the wind, the hills, the traffic.
We just had a slow weekend, Kelly gambled and lost, Michelle and I watched the movie Fried Green Tomatoes...bad idea. Best friends, one dies. Hmmm, hand me the kleenex.
But nothing special, just relaxing. No problems on the drive home either. So yea for me.
I made it, no anxiety attacks.
Monday Kelly started back to work. I actually felt ok about it. I really haven't been worried. I've had a really busy week, actually too much to do. I've been to the dentist twice, I hate my teeth,
had cousin lunch (thanks for the ride Carrie) had my nails done and did some shopping for a bridal shower on Saturday. I have been feeling great, not using my 02 at all, having lots of energy.
Then yesterday late afternoon happened. Tired, achey, chills, little temp. Ok, take two aspirin and call me in the morning. Today I had an appointment scheduled to go back on the study drug. I almost called in to say I couldn't come. I was sick. But that's stupid, I need the med.
Woke up cold, turned on the bathroom heater and took a hot shower. I had a hard time getting out cuz it was cold out. Headache, body ache, temp, chills, short of breath. By the time I got to the doc's it was 102. My heart rate was elevated, no one knows why. They had me walk down the hall to do my PFT's and I had a bleed. Not large, very small by comparison, but I lost it. Not in a big way, just scared and frustrated. I cried, boo hoo. Here we go again. It's been three weeks since surgery. Each time it's 3 weeks after that it starts again. But like I said it was very small. So I cheered up and went about doing the stuff I needed to do. But they weren't sure if I could go on the study without doing PFT's, but I wasn't about to do them and possibly have another bleed. So the doc wanted me to go on the drug anyway, and he put me on two other antibiotics, in the form of pills. I've only been off of IV's one week. I will go back on if I need to but I really don't want to. So the drug study people called "sponsor" and they said I could go on the drug.
So I'm on three antibiotics. I was told if I don't feel better in 2 or 3 days to call back. Then when I got in my car, I thought I was bleeding agian. The drug study guy, Luis, walked me to the car. He asked if I wanted to be checked out and I said no, go ahead so he left. Bad idea. It was another bleed. I sat in the car for about 5 minutes spitting out blood. Now I'm really nervous. I have a long drive home and there will be traffic. Ok......go.
Driving, driving, driving (singing to music). Think I'll call Kelly and see if he can get off early and we can drive home together, or follow each other. Hello, hello, phone cuts out. Darn it!
Ok, I can do it. Driving, driving, driving. Should I drive in the fast lane and hopefully get there quicker or should I drive in the slow lane in case I need to get off the freeway? But the slow lane will make me crazy and I'll kill someone! I finally made it home with no further incident (in the fast lane).
Blah, blah, dinner with Kelly and tell him about my day, blah blah, savon for perscriptions, blah blah, Kelly goes out for a while (now) and I have another bleed. Larger than the other two. Ok, that's 3 in one day. What should I do?
I have my 02 on, I have my phone ready in case.... I hate feeling this way. I hate living this way.
Guess I'll go be very still and not do anything, although I wasn't doing anything but talking on the phone when this one happened.
A collective crossing of your fingers, toes and anything else that crosses would be appreciated.
Talk to the fairies, do your no bleeding dance. If I can just make it 2 more months I'll have surgery again. Yea, two months.....
Ok, our weekend went great. I amazed myself by not thinking about bleeding in the middle of the desert until an hour into the trip. Only 3 more to go....But there were no incidents, no problems. Our little prius got 50 miles per gallon. Not bad with the wind, the hills, the traffic.
We just had a slow weekend, Kelly gambled and lost, Michelle and I watched the movie Fried Green Tomatoes...bad idea. Best friends, one dies. Hmmm, hand me the kleenex.
But nothing special, just relaxing. No problems on the drive home either. So yea for me.
I made it, no anxiety attacks.
Monday Kelly started back to work. I actually felt ok about it. I really haven't been worried. I've had a really busy week, actually too much to do. I've been to the dentist twice, I hate my teeth,
had cousin lunch (thanks for the ride Carrie) had my nails done and did some shopping for a bridal shower on Saturday. I have been feeling great, not using my 02 at all, having lots of energy.
Then yesterday late afternoon happened. Tired, achey, chills, little temp. Ok, take two aspirin and call me in the morning. Today I had an appointment scheduled to go back on the study drug. I almost called in to say I couldn't come. I was sick. But that's stupid, I need the med.
Woke up cold, turned on the bathroom heater and took a hot shower. I had a hard time getting out cuz it was cold out. Headache, body ache, temp, chills, short of breath. By the time I got to the doc's it was 102. My heart rate was elevated, no one knows why. They had me walk down the hall to do my PFT's and I had a bleed. Not large, very small by comparison, but I lost it. Not in a big way, just scared and frustrated. I cried, boo hoo. Here we go again. It's been three weeks since surgery. Each time it's 3 weeks after that it starts again. But like I said it was very small. So I cheered up and went about doing the stuff I needed to do. But they weren't sure if I could go on the study without doing PFT's, but I wasn't about to do them and possibly have another bleed. So the doc wanted me to go on the drug anyway, and he put me on two other antibiotics, in the form of pills. I've only been off of IV's one week. I will go back on if I need to but I really don't want to. So the drug study people called "sponsor" and they said I could go on the drug.
So I'm on three antibiotics. I was told if I don't feel better in 2 or 3 days to call back. Then when I got in my car, I thought I was bleeding agian. The drug study guy, Luis, walked me to the car. He asked if I wanted to be checked out and I said no, go ahead so he left. Bad idea. It was another bleed. I sat in the car for about 5 minutes spitting out blood. Now I'm really nervous. I have a long drive home and there will be traffic. Ok......go.
Driving, driving, driving (singing to music). Think I'll call Kelly and see if he can get off early and we can drive home together, or follow each other. Hello, hello, phone cuts out. Darn it!
Ok, I can do it. Driving, driving, driving. Should I drive in the fast lane and hopefully get there quicker or should I drive in the slow lane in case I need to get off the freeway? But the slow lane will make me crazy and I'll kill someone! I finally made it home with no further incident (in the fast lane).
Blah, blah, dinner with Kelly and tell him about my day, blah blah, savon for perscriptions, blah blah, Kelly goes out for a while (now) and I have another bleed. Larger than the other two. Ok, that's 3 in one day. What should I do?
I have my 02 on, I have my phone ready in case.... I hate feeling this way. I hate living this way.
Guess I'll go be very still and not do anything, although I wasn't doing anything but talking on the phone when this one happened.
A collective crossing of your fingers, toes and anything else that crosses would be appreciated.
Talk to the fairies, do your no bleeding dance. If I can just make it 2 more months I'll have surgery again. Yea, two months.....
Thursday, August 10, 2006
Yet another doctor visit
Yep, it was off to the doctor again today. But it was great. I'm finally off of IV's after a long 4 weeks. And my PFT's (pulmonary function tests) came back very good. My FVC (forced vital capacity) came back with an all time high of 51% of predicted. I haven't had a score that high in over 2 years. My FEV1 (forced expiratory volume in 1 second) came out at 35%. I usually hover around 31 or 32%. That may seem like a small difference, but 30% is when they like you to be listed for transplant. So I'm now further away, yahoo!. Also, FEV1 is the number they go by for qualification for a handicapped placard for your car. You have to have an FEV1 of less than 1.00liters. Mine is .99, so I just barely made it. I'm almost not handicapped any more, heee hee.
Oh, FEV1 shows how your large airways are working, your main stem bronchi and your trachea.
FVC is kinda like your lung capacity.
The only bad part was my FEF 25-75% (forced expiratory flow) is down to 12%. Yep, just 12. That shows what your actual lungs are doing, the small airways, like the lower and outer portions. So while my lungs show only 12% functioning, I am still able to do as well as I am.
They weren't happy that I lost a pound from last week. What's a girl to do?
Kelly and I then went to eat and to the mall in our new Prius, getting over 50 miles per gallon, and walked around. I did the whole mall with no oxygen and didn't walk any slower than normal. Only one coughing attack and it was a short one. Next thing you know I'll be jogging....maybe not!
So it's been a very good day. This weekend we are driving out to Michelle's house in Arizona.
It is sorta my implosion tactic to get over my fear of being out of reach of help. Wish me luck and hope I don't have an anxiety attack! We are only staying till Sunday morning then anxiety attack again on the way home. Kelly goes back to work on Monday, so I have to get used to being on my own. I think I'm ok really, but I guess we'll see!
So that's it. A very good day for me. Hope it was a good day for all of you!
Carrie, I'll see you next Wednesday! Merle too.
P.S. Check out USACFA.com Click on about us. I'm at the bottom.
Oh, FEV1 shows how your large airways are working, your main stem bronchi and your trachea.
FVC is kinda like your lung capacity.
The only bad part was my FEF 25-75% (forced expiratory flow) is down to 12%. Yep, just 12. That shows what your actual lungs are doing, the small airways, like the lower and outer portions. So while my lungs show only 12% functioning, I am still able to do as well as I am.
They weren't happy that I lost a pound from last week. What's a girl to do?
Kelly and I then went to eat and to the mall in our new Prius, getting over 50 miles per gallon, and walked around. I did the whole mall with no oxygen and didn't walk any slower than normal. Only one coughing attack and it was a short one. Next thing you know I'll be jogging....maybe not!
So it's been a very good day. This weekend we are driving out to Michelle's house in Arizona.
It is sorta my implosion tactic to get over my fear of being out of reach of help. Wish me luck and hope I don't have an anxiety attack! We are only staying till Sunday morning then anxiety attack again on the way home. Kelly goes back to work on Monday, so I have to get used to being on my own. I think I'm ok really, but I guess we'll see!
So that's it. A very good day for me. Hope it was a good day for all of you!
Carrie, I'll see you next Wednesday! Merle too.
P.S. Check out USACFA.com Click on about us. I'm at the bottom.
Wednesday, August 09, 2006
nerves of steel?
Last night and today I had adventures all by myself. Last night I went to the grocery store alone. I was nervous and more so when I realized I forgot my cell phone. The shopping part was ok, no rush, took my time. When I got to the check out line I was the only one there, cool you'd think. But no, then 5 or so people lined up behind me. So I'm trying to hurry, but bending over the cart to take the stuff out, putting it on the belt, trying not to let my 02 smack into the junk in the isle, trying not to use my arm with the IV in it...I was so out of breath. Then I paid and out I went. Putting the stuff in the trunk...a little hard. Then I came to the 12 pack of sprite. They put it down under the cart. I can barely squat down and get back up with the 02 on my back. And now I have to lift a 12 pack of soda? So down I go, I really struggled to get up, didn't think I'd make it but I did. Yea me!!!
I did leave it in the car when I got home for Kelly to get. That along with the other heavy stuff that didn't have to go in the fridge. Thanks hunny!
Then today, the dentist. I started getting nervous on the way there. What if they tilt me back too far and I can't breathe? What if the shot of novacain makes my heart race (it always does for me) and that makes the blood flow too fast and I break a vein or artery? What if.....
But it all went ok. I didn't let them tilt me too far. I did panic a few times with the water in my throat, just felt too drowning, like, well you know. But the shots didn't make my heart race, maybe it already was so I didn't notice the difference:) This is such a good dentist. The shots didn't even hurt except one or two times. So, whew, made it thru that!
After that, Kelly and I went car shopping. As of tomorrow we will be the proud owners of a Toyota Prius. Our payments are sky high cuz we were upside down on the truck, but the higher payments and gas will still be less than the truck payments and gas. And we'll be good for the environment! Yea us!
Lastly, I sometimes just want to hit people. Someone at Kelly's work actually ask him if he was now on vacation. Yes I'm doing better, no I'm not able to do all the stuff I used to and frankly I'm paranoid about being alone. I'm trying, that's why I had my adventures, but what a jerk. It's the way he said it, like accusatory. Yep, my wife almost kicked the bucket, so now we're on vacation, living it up! With no pay check for now I might add. Jerk. I feel good, but I can't imagine all this time being home alone. I'd be a basket case. Maybe I still am but more so!
I do have a good news item. We actually got approved right away for the hospitalization at San Antonios and at St. Josephs. Wow, they actually figured I should have been in the hospital this time with no arguments? Cool. Guess that's it. Off to do IV"s again.
I did leave it in the car when I got home for Kelly to get. That along with the other heavy stuff that didn't have to go in the fridge. Thanks hunny!
Then today, the dentist. I started getting nervous on the way there. What if they tilt me back too far and I can't breathe? What if the shot of novacain makes my heart race (it always does for me) and that makes the blood flow too fast and I break a vein or artery? What if.....
But it all went ok. I didn't let them tilt me too far. I did panic a few times with the water in my throat, just felt too drowning, like, well you know. But the shots didn't make my heart race, maybe it already was so I didn't notice the difference:) This is such a good dentist. The shots didn't even hurt except one or two times. So, whew, made it thru that!
After that, Kelly and I went car shopping. As of tomorrow we will be the proud owners of a Toyota Prius. Our payments are sky high cuz we were upside down on the truck, but the higher payments and gas will still be less than the truck payments and gas. And we'll be good for the environment! Yea us!
Lastly, I sometimes just want to hit people. Someone at Kelly's work actually ask him if he was now on vacation. Yes I'm doing better, no I'm not able to do all the stuff I used to and frankly I'm paranoid about being alone. I'm trying, that's why I had my adventures, but what a jerk. It's the way he said it, like accusatory. Yep, my wife almost kicked the bucket, so now we're on vacation, living it up! With no pay check for now I might add. Jerk. I feel good, but I can't imagine all this time being home alone. I'd be a basket case. Maybe I still am but more so!
I do have a good news item. We actually got approved right away for the hospitalization at San Antonios and at St. Josephs. Wow, they actually figured I should have been in the hospital this time with no arguments? Cool. Guess that's it. Off to do IV"s again.
Friday, August 04, 2006
chatty cathy
I'm just being miss chatty cathy this week aren't I? Tonite it is because I just wanted to tell you what cool thing happened. My sister and I went out to dinner tonite at the Montclair mall. We were going to go to Olive Garden but it was packed with many people waiting outside. So we looked at Red Lobster, same thing. So we decided on Chili's. The parking lot was packed, but the waiting area wasn't. So Lynn dropped me off so I didn't have to walk far and she went to park the car. Well I went in the door and realized immediately it was some side door, not the front door to the place. There were two uniformed people sitting there which at first I thought were security. I asked them where the front of the building was and the guy said, "Hey weren't we just out at your place a couple of weeks ago?" Ok, hear brain clicking in, firetruck in the parking lot... not security. I said, if you were in Upland with a person covered in blood and not breathing, yep it was me. But I don't remember anything. And it was him. It was so cool to be able to meet one of the guys that came to help me and to say thank you so very much. I told him I was so happy they didn't let me die! We talked a bit about CF, he had questions and wanted to know why I was bleeding. He has a friend with a child with CF. I teased him and said "and you ask if I had a DNR" He said they have to ask, and I said, no that's when you know it's bad, you don't ask people with a broken leg if they have a DNR. He laughed. I wish I could have met the entire team, but it is nice to put a face to at least one empty memory. They were amazed I was out and about especially when he realized it was just two weeks from tonite that they had been called.
The big coincidence is that he is Upland Fire and I live in Upland. This restaurant is in Montclair. He said he was just helping out in Montclair today. If he hadn't been helping out outside his usual city and we didn't feel like waiting at Olive Garden or Red Lobster, then we would have never run into each other. Now that's cool!
The big coincidence is that he is Upland Fire and I live in Upland. This restaurant is in Montclair. He said he was just helping out in Montclair today. If he hadn't been helping out outside his usual city and we didn't feel like waiting at Olive Garden or Red Lobster, then we would have never run into each other. Now that's cool!
Thursday, August 03, 2006
Wednesday, August 02, 2006
Doc visit
Had my visit today and it went well. The bug I was exposed to is no big deal, nothing to worry about. Whew! My PFT's were the same as before the big "event". Actually a little better. I knew they had to have scraped out some gunk while they had me on the vent. I'm still on IV's for another week, I'm still supposed to gain weight, and I'm still supposed to take it slow. I don't know about that...there is so much to do!
Kelly and I walked around Ontario Mills today. As you may or may not know it is 2/3 mile around. I could walk it just fine. Walking and talking however...not so good. So Kelly got to hear silence for a while! But I felt fine during and after. That could be because after the doc's I came home and slept for almost 2 hours. I just can't get up that early, blah.
Tomorrow, we are going to stop being lazy here. Kelly doesn't know that yet, heeee heee.
But he will! There are chores to be done. Yep Jeri is right, I've always been the cleaning girl. But I've been slacking and it's time to get back in gear! I know my hunny will be so happy. :0
K, that's all, off to do more IV's!
Kelly and I walked around Ontario Mills today. As you may or may not know it is 2/3 mile around. I could walk it just fine. Walking and talking however...not so good. So Kelly got to hear silence for a while! But I felt fine during and after. That could be because after the doc's I came home and slept for almost 2 hours. I just can't get up that early, blah.
Tomorrow, we are going to stop being lazy here. Kelly doesn't know that yet, heeee heee.
But he will! There are chores to be done. Yep Jeri is right, I've always been the cleaning girl. But I've been slacking and it's time to get back in gear! I know my hunny will be so happy. :0
K, that's all, off to do more IV's!
Tuesday, August 01, 2006
What, no white light?
I have been doing some thinking and I just have to say, I didn't see no freakin white light last week, or any of my loving passed on relatives to guide me into the missing light...what the heck? My life didn't flash before my eyes, and I didn't relive any great or sad moments. Hmmmmm.
Because that is all hooey or because it wasn't my time? I don't think I mentioned, because I didn't recall, that Kelly had just gotten home about 15 minutes before the "crisis". Hmmmm. It really must not have been my time. But we've decided that we are not going to do this again. It is not acceptable. So you won't have to read any more stressed out blogs, we're just not going to have this happen again. K? Ok!
I have a doctors appointment tomorrow. I've been coughing a lot and found out today that I have been exposed to Serratia, which is a rare gram negative bacteria. From a visitor that didn't know she had it. So now I'll have to be tested. Don't know if that's what is causing my cough, or if I just have allergies. I wonder with this weird weather if my sinuses are hating life.
Anyway, nothing new on the home front except that I feel pretty back to normal. No worse for the wear. Isn't that odd? You'd think there'd be something lingering. But other than my wacked out mind, I'm fine. And maybe my mind has always been wacked out...another, hmmmmmm.
Thanks for all the comments posted during this time. It really helps to read them. I love getting comments! I hope to see everyone soon and you'll say I just look like normal. You will say that, right?
Because that is all hooey or because it wasn't my time? I don't think I mentioned, because I didn't recall, that Kelly had just gotten home about 15 minutes before the "crisis". Hmmmm. It really must not have been my time. But we've decided that we are not going to do this again. It is not acceptable. So you won't have to read any more stressed out blogs, we're just not going to have this happen again. K? Ok!
I have a doctors appointment tomorrow. I've been coughing a lot and found out today that I have been exposed to Serratia, which is a rare gram negative bacteria. From a visitor that didn't know she had it. So now I'll have to be tested. Don't know if that's what is causing my cough, or if I just have allergies. I wonder with this weird weather if my sinuses are hating life.
Anyway, nothing new on the home front except that I feel pretty back to normal. No worse for the wear. Isn't that odd? You'd think there'd be something lingering. But other than my wacked out mind, I'm fine. And maybe my mind has always been wacked out...another, hmmmmmm.
Thanks for all the comments posted during this time. It really helps to read them. I love getting comments! I hope to see everyone soon and you'll say I just look like normal. You will say that, right?
Sunday, July 30, 2006
My memory of the story
Hi Everyone,
Well, I've had a few days to process all that has happened and am going to try to write it down. I'm writing it for my own purging and for those that are like me and need details, details! I'm not sure how far I'll get tonite as I am still having a hard time with my brain being a very sad little guy. I cry at most things, a song, 100 years by Five for Fighting, some hallmark commercial, something going wrong at the house such as blood still being in the bathroom... I've read Kelly's blog over and over and I can't get past him hearing me say I love you without breaking down. I figure someday when I can read that without crying I'll be making real progress. Oh, shit, now see, I'm crying.
So, deep breath, here goes.
Friday night, about 9 or 9:30. I'm just sitting on the couch watching TV. I had been out watering the lawn till about 8:30 as it was so hot. Don't know if that means anything or not.
But I felt the first rush of blood, different than anything I've ever felt before. I knew from the second it started, literally the second, that is was different from all my other bleeds however large and that I might die. I ran down the hall with no time to try to get to a Kleenex or sink. I don't remember yelling for Kelly, but he came in quickly. I think he could hear me breathe and splat blood in the sink. I ask for air in a frantic sort of way and then ask him to turn it up. Putting on 02 didn't seem to help, but maybe it did a little bit to help me before the paramedics got there. I couldn't inhale and started asking for 911. I kept saying I can't breathe. Every time I tried to inhale it was like being in the ocean only with really thick water and trying to breathe that water. I can't really remember Kelly calling 911, but I sort of remember him explaining that his wife had CF and was bleeding from the lungs.
I could hear him telling me it would be ok, that I'd be ok. We talked before about a study I had read about people who had stopped bleeding when they were told it was ok to bleed, but then when the wound was clean, they were going to stop bleeding and be ok. And it worked. So I asked Kelly a while back, that when I had a bleed to say that to me. I was trying so hard to think it too, it's going to stop, it's going to stop...but all I kept thinking in between that was I'm going to die, I'm going to die. I can't breathe.
Kelly stood beside me and I remember him putting his hand on my back and I just pushed him away, hard. I will never forget the look of hurt in his eyes, it kills me. I don't know why I pushed him, but when he put his hand on me it just felt so hot, like it was taking any last bit of air I had. I just wanted to have cold on me. I am now crying like a baby, because the last thing I want to ever do is hurt Kelly. He is my life. Then I just remember saying I love you, because I knew I would die then. I remember him saying it back and that's all I remember.
Cut to Sunday or Monday, I'm not sure. I do remember Leona and Connie coming into my room. I think they came one by one and just hugged me or kissed my cheek or patted my hand. I don't remember any words. Kelly says that's weird cuz I had my eyes closed the entire time I was on the vent. There doesn't seem to be any way I could have known they were there. I remember Kelly and Wendy standing over me...but again no words. I remember Kelly's voice saying it would be ok, that I was ok. But I don't know when.
My first real memory is of waking up to Lynn. I don't know what we talked about, but I started crying because I thought Kelly hadn't been there the whole time! Apparently he had just told me he was going to go eat and take a shower and I had said that was fine. That was shortly after I got off the vent. The med's have made an early alzheimers patient out of me! Lynn had to call Kelly and tell him to come back. I think it was Monday when I remember Michelle and Allen, Liz and AJ. They were all there, but I think at different times. Or wait, Sunday if they had to leave for work? Anyway, Michelle and I cried because she had to go home and I didn't want her to. She didn't want to leave either, but she had to go to work. At that point, thankfully my memory was so lost, I forgot that till later. I remember saying I had a boy pee pee...what a doof I am. I remember my catheter coming out, I think that was Monday. I was thankful it didn't hurt. I remember Kelly being there, then leaving to get something for my transport to Orange and AJ stayed with me till I left. I remember the paramedics transporting me to St. Joe's and being very dizzy. (me, not the 3 female paramedics) And telling them where the mall was and the food. They liked that idea.
I know on Monday I had some phone calls, but I've lost that already. I think I slept a lot except for my vitals being taken 100 times. Kelly came, Lynn came, Dr. Y came...I knew that I was NPO after 12 so I could have surgery the next day. And I was so very hungry. I heard stories about Lynn having KFC and me wanting it! But I also heard stories about my barfing every time I tried to move, so no KFC for me! That was at San Antonio's not St. Joe's.
I know that I was very tearful. Everything scared me. I could still feel some gurgling in my lungs and was terrified that I'd start bleeding again. I believe I took a shower on Monday night and finally got the last of the blood off of me, from under my nails, out of my hair. It felt wonderful. Then Tuesday I had surgery. It didn't last too long, only about 2 hours. But I still felt scared. The surgeries make you cough up gunk, and I had lots of old blood to be rid of still. Every time I coughed, I thought it was blood. I think Kelly and Lynn were there. Kelly was not there when I went into surgery because the air conditioner was broke and he was trying to find a fuse for it. So Candice, my drug study person came to be with me. She's been a huge help. Kelly got there right as I got out of surgery. Lynn was there later.
Repeat on Wednesday except Kelly was there early. Rest on Thursday and home on Friday.
It is usually me who is fighting to go home and Kelly telling me to just rest and take it easy. This time he wanted me to come home and I wanted to stay there. I was like, nope, I think I'll just live in the hospital now. I'm still dizzy, my back and chest hurt a bit, I'm tired and feel like I'm going to pass out often. Last night was my first night in my own bed. Ahhhhh. I went to bed late after IV's and didn't get up till 1. I wouldn't have gotten up then either but I was starving! Today we went to eat, to the grocery store after a two hour nap on my part.
We got the bathroom cleaned up, I couldn't stand the blood any more. It was pretty clean, someone washed the rugs and towels, but there was blood on the walls, the counter, the mirror. I couldn't stand looking at it. I think I've talked to or emailed most people. I know Kim has called a couple of times, Merle called, I think on Monday and was surprised to hear me answer the phone, and a few other times. A friend or two has called.
I am re reading this and hear it all coming from my head. That's because my heart still is so sad. I don't know how to get past this. I don't know how to do anything alone any more. I'm always afraid. I've already had some blood in my sputum. Just miniscule amounts, but it scares me. I am on 02 most of the time. I don't feel very great without it. I had an 'almost' passed out in the shower at the hospital and couldn't breathe. They had to put me in the bed with my head down, crank the air.... what if that keeps happening?
Kelly keeps reminding me I was on a vent a week ago, plus two surgeries not even a week ago. So I need to give it time. Kelly is going to take off work for a few weeks to help me, to try to get me strong enough to be ok. But who is going to fix my brain? We were coming home from the grocery store and the Five for fighting song came on. I turned it up cuz I really like it and half way thru I just lost it. I crawled into bed last night crying and I couldn't stop. Kelly is like my "bankie" and I need it all the time. That has got to be annoying. And conversation...forget it. I turn it back to me and this last week. So if anyone wants to hear it I guess I'm needing to say it over and over! Hopefully this writing will help too.
I do like hearing the stories of when I was out of it. I'm so thankful I can't remember all the horrible stuff. Being suctioned, crying and crying, thrashing against the restraints, saying no, no , no in sign language. Although apparently I'm a funny girl...oh polite too, guess I told Donna thank you very much for coming to see me! I don't even remember her being there.
I like knowing I told everyone to back away cuz I was gonna barf, but Liz held the bucket anyway. I like knowing I was signing to people that they were trying to kill me, he heeee. I don't like all the bruises on my arms and legs. Guess I was not too happy either. I was hurting I told them and I guess they woke me up enough to ask me if they took me off the vent and it didn't work, did I want to go back on and I said yes. Yea me. Of course you better keep trying.
I thank Merle for getting there so quickly, and my sister for being there for so many hours. And for everyone who helped Kelly just by being there. I'm so glad Wendy stayed with him and kept him company. I never knew so many people cared about me and that makes me happy and sad all at the same time.
So, long story short, drug induced alzheimers is good, barfing is bad, surgery is painful but necessary, even if two days in a row. Friends, family, priceless. Thank you.
Well, I've had a few days to process all that has happened and am going to try to write it down. I'm writing it for my own purging and for those that are like me and need details, details! I'm not sure how far I'll get tonite as I am still having a hard time with my brain being a very sad little guy. I cry at most things, a song, 100 years by Five for Fighting, some hallmark commercial, something going wrong at the house such as blood still being in the bathroom... I've read Kelly's blog over and over and I can't get past him hearing me say I love you without breaking down. I figure someday when I can read that without crying I'll be making real progress. Oh, shit, now see, I'm crying.
So, deep breath, here goes.
Friday night, about 9 or 9:30. I'm just sitting on the couch watching TV. I had been out watering the lawn till about 8:30 as it was so hot. Don't know if that means anything or not.
But I felt the first rush of blood, different than anything I've ever felt before. I knew from the second it started, literally the second, that is was different from all my other bleeds however large and that I might die. I ran down the hall with no time to try to get to a Kleenex or sink. I don't remember yelling for Kelly, but he came in quickly. I think he could hear me breathe and splat blood in the sink. I ask for air in a frantic sort of way and then ask him to turn it up. Putting on 02 didn't seem to help, but maybe it did a little bit to help me before the paramedics got there. I couldn't inhale and started asking for 911. I kept saying I can't breathe. Every time I tried to inhale it was like being in the ocean only with really thick water and trying to breathe that water. I can't really remember Kelly calling 911, but I sort of remember him explaining that his wife had CF and was bleeding from the lungs.
I could hear him telling me it would be ok, that I'd be ok. We talked before about a study I had read about people who had stopped bleeding when they were told it was ok to bleed, but then when the wound was clean, they were going to stop bleeding and be ok. And it worked. So I asked Kelly a while back, that when I had a bleed to say that to me. I was trying so hard to think it too, it's going to stop, it's going to stop...but all I kept thinking in between that was I'm going to die, I'm going to die. I can't breathe.
Kelly stood beside me and I remember him putting his hand on my back and I just pushed him away, hard. I will never forget the look of hurt in his eyes, it kills me. I don't know why I pushed him, but when he put his hand on me it just felt so hot, like it was taking any last bit of air I had. I just wanted to have cold on me. I am now crying like a baby, because the last thing I want to ever do is hurt Kelly. He is my life. Then I just remember saying I love you, because I knew I would die then. I remember him saying it back and that's all I remember.
Cut to Sunday or Monday, I'm not sure. I do remember Leona and Connie coming into my room. I think they came one by one and just hugged me or kissed my cheek or patted my hand. I don't remember any words. Kelly says that's weird cuz I had my eyes closed the entire time I was on the vent. There doesn't seem to be any way I could have known they were there. I remember Kelly and Wendy standing over me...but again no words. I remember Kelly's voice saying it would be ok, that I was ok. But I don't know when.
My first real memory is of waking up to Lynn. I don't know what we talked about, but I started crying because I thought Kelly hadn't been there the whole time! Apparently he had just told me he was going to go eat and take a shower and I had said that was fine. That was shortly after I got off the vent. The med's have made an early alzheimers patient out of me! Lynn had to call Kelly and tell him to come back. I think it was Monday when I remember Michelle and Allen, Liz and AJ. They were all there, but I think at different times. Or wait, Sunday if they had to leave for work? Anyway, Michelle and I cried because she had to go home and I didn't want her to. She didn't want to leave either, but she had to go to work. At that point, thankfully my memory was so lost, I forgot that till later. I remember saying I had a boy pee pee...what a doof I am. I remember my catheter coming out, I think that was Monday. I was thankful it didn't hurt. I remember Kelly being there, then leaving to get something for my transport to Orange and AJ stayed with me till I left. I remember the paramedics transporting me to St. Joe's and being very dizzy. (me, not the 3 female paramedics) And telling them where the mall was and the food. They liked that idea.
I know on Monday I had some phone calls, but I've lost that already. I think I slept a lot except for my vitals being taken 100 times. Kelly came, Lynn came, Dr. Y came...I knew that I was NPO after 12 so I could have surgery the next day. And I was so very hungry. I heard stories about Lynn having KFC and me wanting it! But I also heard stories about my barfing every time I tried to move, so no KFC for me! That was at San Antonio's not St. Joe's.
I know that I was very tearful. Everything scared me. I could still feel some gurgling in my lungs and was terrified that I'd start bleeding again. I believe I took a shower on Monday night and finally got the last of the blood off of me, from under my nails, out of my hair. It felt wonderful. Then Tuesday I had surgery. It didn't last too long, only about 2 hours. But I still felt scared. The surgeries make you cough up gunk, and I had lots of old blood to be rid of still. Every time I coughed, I thought it was blood. I think Kelly and Lynn were there. Kelly was not there when I went into surgery because the air conditioner was broke and he was trying to find a fuse for it. So Candice, my drug study person came to be with me. She's been a huge help. Kelly got there right as I got out of surgery. Lynn was there later.
Repeat on Wednesday except Kelly was there early. Rest on Thursday and home on Friday.
It is usually me who is fighting to go home and Kelly telling me to just rest and take it easy. This time he wanted me to come home and I wanted to stay there. I was like, nope, I think I'll just live in the hospital now. I'm still dizzy, my back and chest hurt a bit, I'm tired and feel like I'm going to pass out often. Last night was my first night in my own bed. Ahhhhh. I went to bed late after IV's and didn't get up till 1. I wouldn't have gotten up then either but I was starving! Today we went to eat, to the grocery store after a two hour nap on my part.
We got the bathroom cleaned up, I couldn't stand the blood any more. It was pretty clean, someone washed the rugs and towels, but there was blood on the walls, the counter, the mirror. I couldn't stand looking at it. I think I've talked to or emailed most people. I know Kim has called a couple of times, Merle called, I think on Monday and was surprised to hear me answer the phone, and a few other times. A friend or two has called.
I am re reading this and hear it all coming from my head. That's because my heart still is so sad. I don't know how to get past this. I don't know how to do anything alone any more. I'm always afraid. I've already had some blood in my sputum. Just miniscule amounts, but it scares me. I am on 02 most of the time. I don't feel very great without it. I had an 'almost' passed out in the shower at the hospital and couldn't breathe. They had to put me in the bed with my head down, crank the air.... what if that keeps happening?
Kelly keeps reminding me I was on a vent a week ago, plus two surgeries not even a week ago. So I need to give it time. Kelly is going to take off work for a few weeks to help me, to try to get me strong enough to be ok. But who is going to fix my brain? We were coming home from the grocery store and the Five for fighting song came on. I turned it up cuz I really like it and half way thru I just lost it. I crawled into bed last night crying and I couldn't stop. Kelly is like my "bankie" and I need it all the time. That has got to be annoying. And conversation...forget it. I turn it back to me and this last week. So if anyone wants to hear it I guess I'm needing to say it over and over! Hopefully this writing will help too.
I do like hearing the stories of when I was out of it. I'm so thankful I can't remember all the horrible stuff. Being suctioned, crying and crying, thrashing against the restraints, saying no, no , no in sign language. Although apparently I'm a funny girl...oh polite too, guess I told Donna thank you very much for coming to see me! I don't even remember her being there.
I like knowing I told everyone to back away cuz I was gonna barf, but Liz held the bucket anyway. I like knowing I was signing to people that they were trying to kill me, he heeee. I don't like all the bruises on my arms and legs. Guess I was not too happy either. I was hurting I told them and I guess they woke me up enough to ask me if they took me off the vent and it didn't work, did I want to go back on and I said yes. Yea me. Of course you better keep trying.
I thank Merle for getting there so quickly, and my sister for being there for so many hours. And for everyone who helped Kelly just by being there. I'm so glad Wendy stayed with him and kept him company. I never knew so many people cared about me and that makes me happy and sad all at the same time.
So, long story short, drug induced alzheimers is good, barfing is bad, surgery is painful but necessary, even if two days in a row. Friends, family, priceless. Thank you.
Tuesday, July 25, 2006
hi everyone
Hi everyone,
I"m not up to date on what everyone is doing but I sure hope everyone is good. I'm doing ok...trying to be upbeat! I know Kelly has kept you all updated for me, he's my hero! I'm having another surgrey tomorrow. I guess they went back and were looking at all the reports, scan's whatever, and found a few more places they think need to be glued. I'm telling you, take stock out now. I don't want to have another surgery but I'm very glad they are trying to get everything before I go home. I am pretty terrified still of it happening again and me being alone. What would happen then? Anyway, I'm more upbeat than this email sounds. I'm just tired tonite. I have lovely blue arms from fighting the vent guys, hate those vent guys, hee heee. They probably aren't thrilled with me either! But they saved me. You all helped save me too. Your messages and prayers mean more than you'll ever know. I cried reading them. I will try to get back to everyone eventually. Oh, I did get to lower my 02 to 2 liters again. I'm not sure if that is enough, but we'll see. It's my usual for sleep or exercise.
So, I'll keep this short and maybe write more later. Thank you all for being there.
Love,
I"m not up to date on what everyone is doing but I sure hope everyone is good. I'm doing ok...trying to be upbeat! I know Kelly has kept you all updated for me, he's my hero! I'm having another surgrey tomorrow. I guess they went back and were looking at all the reports, scan's whatever, and found a few more places they think need to be glued. I'm telling you, take stock out now. I don't want to have another surgery but I'm very glad they are trying to get everything before I go home. I am pretty terrified still of it happening again and me being alone. What would happen then? Anyway, I'm more upbeat than this email sounds. I'm just tired tonite. I have lovely blue arms from fighting the vent guys, hate those vent guys, hee heee. They probably aren't thrilled with me either! But they saved me. You all helped save me too. Your messages and prayers mean more than you'll ever know. I cried reading them. I will try to get back to everyone eventually. Oh, I did get to lower my 02 to 2 liters again. I'm not sure if that is enough, but we'll see. It's my usual for sleep or exercise.
So, I'll keep this short and maybe write more later. Thank you all for being there.
Love,
Monday, July 24, 2006
A Long Day
DISCLAMER: Details may too difficult for some with similar tragic experiences.
Some days start when I wake up to go to work and end when go to bed. Those are short days. This day started at 9:30pm PDT on July 21 and ended 12 noon on July 23.
“Kelly!” Is how it started. I ran into the bathroom and heard it before I saw it. The sound of thick fluid poring into the sink was something I had heard before but this was different. It was louder and thinker. Then I saw her. Blood was everywhere. “Air! Air!” she said. I ran to the machine and put it on. She signaled to crank it up. The blood still was coming. “911!, 911!” She said. Our greatest fear was becoming a reality. I called and waited. Helpless and powerless I waited. I thought I would try something we had talked about.
“Carol, your body is going to stop bleeding now. Your body is starting to heal it self. The paramedics are on the way and will be here soon. You’re going to make it to the hospital and your going to be ok.” I said this one more time and she started to drop down. I think she knew if she sat down she would never get back up again. She kept pushing me away. I held my and hand on her side and could feel and hear the blood in her lungs. Then she sat down on the toilet. As the firemen came down the hall way I could hear her whisper, “I love you.” All I could do was say, I love you too. Then her eyes rolled over and the firemen took over.
“Does Carol have a DNR?” one said to me. Shock set in. They where looking to me. I was trying to remember what we had talked about before if something like this happened. I couldn’t remember. What I did know is that Carol loves life and has never wanted to die. I said no we do not.
10pm.
I arrived at the hospital and was terrified they and ventilated her. I kept asking to see someone to tell them not to vent her. Finally the doc came out and started asking questions about why it was not good to vent. Then he said they had already done it. Her saturation levels when she arrived were 20%. The only option to keep her alive was to ventilate. If I wasn’t in shock before, I certainly went into it then. I asked about transplant and he said she was ineligible while she was on a vent.
Sometimes the best decision is no decision. So I said I would just ride out the night. At 4am she was transported to ICU. I stayed a few min and went home to rest. But when I got home I couldn’t sleep and went back at 7am. We got to meet the lung doctor at around 10am on Saturday. He seemed to be nice but was not experienced with CF. I found out later that when she came in, they didn’t believe she had CF due to her age. They thought it was an example of people thinking they have something but never been tested for it. Well, seems they got it wrong.
About an hour later her doctor from CHOC called ICU and asked to speak to me. He told me that the numbers on the Vent showed that Carol was doing most of her own breathing and that he didn’t see any problems when she came off on Sunday. I can’t begin to express my relief. So I stayed till 9pm on Saturday and tried to come home to sleep. I had a friend stay with me. I finally got in bed at 10 or 11pm. However, I just couldn’t sleep. And gave up at around 2am and got dressed and went back. I stayed with her through the rest of the night and into the morning.
11am Sunday
The lung doctor arrived and said they where ready to remove the vent. They took her off the drug which kept her under and she slowly began to come awake. He told her they where getting ready to remove the tube. He asked her if it didn’t work, does she want it put back in, she said yes. I asked a friend of Carol to come to the hospital. She knows sign language. Her efforts helped us understand that she was in pain from the tube. When we told her they where going to take it out she started to point and say, “They are going to kill me.” We helped her understand that she was not going to die when they took the tube out. It took a few times but I think we helped her.
Then the tube came out. She breathed on her own. And she cried. I cried. This very long day for me had finally ended. The nightmare was over and I finally woke up. I still didn’t get to bed till about midnight on Sunday. After 6 solid hours of sleep, I’m ready to face another day with living with someone with Cystic Fibrosis.
Kel, (AKA #1Fan)
Some days start when I wake up to go to work and end when go to bed. Those are short days. This day started at 9:30pm PDT on July 21 and ended 12 noon on July 23.
“Kelly!” Is how it started. I ran into the bathroom and heard it before I saw it. The sound of thick fluid poring into the sink was something I had heard before but this was different. It was louder and thinker. Then I saw her. Blood was everywhere. “Air! Air!” she said. I ran to the machine and put it on. She signaled to crank it up. The blood still was coming. “911!, 911!” She said. Our greatest fear was becoming a reality. I called and waited. Helpless and powerless I waited. I thought I would try something we had talked about.
“Carol, your body is going to stop bleeding now. Your body is starting to heal it self. The paramedics are on the way and will be here soon. You’re going to make it to the hospital and your going to be ok.” I said this one more time and she started to drop down. I think she knew if she sat down she would never get back up again. She kept pushing me away. I held my and hand on her side and could feel and hear the blood in her lungs. Then she sat down on the toilet. As the firemen came down the hall way I could hear her whisper, “I love you.” All I could do was say, I love you too. Then her eyes rolled over and the firemen took over.
“Does Carol have a DNR?” one said to me. Shock set in. They where looking to me. I was trying to remember what we had talked about before if something like this happened. I couldn’t remember. What I did know is that Carol loves life and has never wanted to die. I said no we do not.
10pm.
I arrived at the hospital and was terrified they and ventilated her. I kept asking to see someone to tell them not to vent her. Finally the doc came out and started asking questions about why it was not good to vent. Then he said they had already done it. Her saturation levels when she arrived were 20%. The only option to keep her alive was to ventilate. If I wasn’t in shock before, I certainly went into it then. I asked about transplant and he said she was ineligible while she was on a vent.
Sometimes the best decision is no decision. So I said I would just ride out the night. At 4am she was transported to ICU. I stayed a few min and went home to rest. But when I got home I couldn’t sleep and went back at 7am. We got to meet the lung doctor at around 10am on Saturday. He seemed to be nice but was not experienced with CF. I found out later that when she came in, they didn’t believe she had CF due to her age. They thought it was an example of people thinking they have something but never been tested for it. Well, seems they got it wrong.
About an hour later her doctor from CHOC called ICU and asked to speak to me. He told me that the numbers on the Vent showed that Carol was doing most of her own breathing and that he didn’t see any problems when she came off on Sunday. I can’t begin to express my relief. So I stayed till 9pm on Saturday and tried to come home to sleep. I had a friend stay with me. I finally got in bed at 10 or 11pm. However, I just couldn’t sleep. And gave up at around 2am and got dressed and went back. I stayed with her through the rest of the night and into the morning.
11am Sunday
The lung doctor arrived and said they where ready to remove the vent. They took her off the drug which kept her under and she slowly began to come awake. He told her they where getting ready to remove the tube. He asked her if it didn’t work, does she want it put back in, she said yes. I asked a friend of Carol to come to the hospital. She knows sign language. Her efforts helped us understand that she was in pain from the tube. When we told her they where going to take it out she started to point and say, “They are going to kill me.” We helped her understand that she was not going to die when they took the tube out. It took a few times but I think we helped her.
Then the tube came out. She breathed on her own. And she cried. I cried. This very long day for me had finally ended. The nightmare was over and I finally woke up. I still didn’t get to bed till about midnight on Sunday. After 6 solid hours of sleep, I’m ready to face another day with living with someone with Cystic Fibrosis.
Kel, (AKA #1Fan)
Saturday, July 22, 2006
Carol
Carol is in ICU. She had a major bleed and is now on a ventilator. Please think of her in your prayers.
Kel
Kel
Sunday, July 16, 2006
Feeling bad
Wow, I'm sure having a hard time with my IV's this time. I started on Friday evening and went to bed with a raging headache. It was still there Saturday morning, but not too bad. But my whole body aches. I feel like a walking bruise. I went and did some things, saw my cousins, saw my friends, then came home and did IV's again. My head felt like, and still feels like, it will explode if I cough. I took a two hour nap yesterday, still woke up with my head hurting, I've taken ibuprofen, tylenol...what else is there? Last night I took a sleeping pill because my head hurt so much I didn't think I could sleep. I woke up several times, running a fever, having chills, and of course my head and body hurting. It's 3:00 now. I am supposed to do my GI cleaning today. I don't know if I can do that also. Running up and down the hall way to get to the restroom doesn't sound like it is going to help my head any. I'm going to call the doctor tomorrow and see if he can do something. I can't hurt like this for a solid two weeks.
I'm sure the heat isn't helping. Our airconditioning is running almost non stop. It is so hot! Last night at 9 I went out to turn on some water and it was still hot. Well, I'm off to go close my eyes and try to think un painful thoughts.
I'm sure the heat isn't helping. Our airconditioning is running almost non stop. It is so hot! Last night at 9 I went out to turn on some water and it was still hot. Well, I'm off to go close my eyes and try to think un painful thoughts.
Thursday, July 13, 2006
My doctor visit
Tuesday was my doctor visit to see the GI doc. I have been having all kinds of problems, least of all is that I look pregnant! So after meeting with this obnoxious man, who mellowed out at the end of the time, is having me do a total clean out, not fun, and then I have to take a medication to keep me from...well....getting pregnant looking again hopefully, then I have to start taking more enzymes with the other medication. On top of that I have to have a pelvic xray and ultra sound to see if there is anything there that shouldn't be and blood work. Did you know hypothyroidism can cause stomach problems? Well, I already know I have hypothyroidism but I'm on medication for that. Yes I have that too. He is wondering if I'm not on enough.
Then on top of that I have to go on IV's. I had no plans to see a pulmonary doc. I just saw one on Thursday prior. But since I've had all kinds of stuff and am so short of breath he decided to put me on IV's so I'll be good for our trip. I told him I'm also going to take prednisone on the trip. It helps so much I don't care about the side effects. He said that's fine and we discussed doses. I actually have been taking it for two nights now and I feel wonderful. I don't think I need IV's but oh well. I will only take the prednisone for 5 days then go off and will feel like crap again so the IV's will probably be good!
Other than that things are good. I finally finished my bag today. My sister came over last night to show me the last stuff, then I almost finished but of course sewed the bottom up wrong so I had to rip it out. I did that last little bit today. yahoo!!! That only took me how long?
My cousin Kim from Washington is here to see her sister and her dad. She's going to stop by on Friday afternoon, then a bunch of us cousins will have lunch on Saturday at the Olive Garden.
Oh, my arm is a tad ripped up. Only 3 cuts really. We were trying to trim our cat's claws. They're so long. So we got the first cat done but it was way harder than the other times we've done it. She wanted no part of it but we finally got them done admist much howling and yowling. I always wanted to use that word, admist. Anywho, then I went to get the other cat. She usually has no problem with me picking her up and she didn't even like that. On the kitchen counter she had a hissy fit. Kelly could only get one and a half feet of claws trimmed. She just went crazy. Then she tried to jump down and I didn't want her to because she's so old and crickedy I didn't want her to get hurt, so I tried to help her down. Bad idea. So I'm not sure when I got the cuts, but they hurt! I had about 15, but only 3 really bled and are still visible. My gentle kitty is not nice. So, it's off to the vet with her! She won't give them a hard time. Plus she has a sore on her tail, so she needs to go any way.
Otherwise, it's just hot. I'm keeping busy, more busy than I really want to somehow.
Oh, Kelly's friend Cambria came to stay for a night. They got to spend some time together and then she and I did after he went to sleep. I had the doc appt the next day so we didn't get to spend too much time the next day but we went to lunch. I'm so glad she doesn't like the stupid TV shows Kelly does, it was 2 against one. Yahoo! If you're out there Cambria, thanks, heee heee. We hope she'll come again when she and we have more time. Nope, not one of those we wanted her to go away quicker!
Guess that really is it. Kelly's truck is in the shop, again. It's only two years old. Too many problems. So he has my car and I'm stuck. It's too hot to be out and about any way!
Have a good day everyone!
Then on top of that I have to go on IV's. I had no plans to see a pulmonary doc. I just saw one on Thursday prior. But since I've had all kinds of stuff and am so short of breath he decided to put me on IV's so I'll be good for our trip. I told him I'm also going to take prednisone on the trip. It helps so much I don't care about the side effects. He said that's fine and we discussed doses. I actually have been taking it for two nights now and I feel wonderful. I don't think I need IV's but oh well. I will only take the prednisone for 5 days then go off and will feel like crap again so the IV's will probably be good!
Other than that things are good. I finally finished my bag today. My sister came over last night to show me the last stuff, then I almost finished but of course sewed the bottom up wrong so I had to rip it out. I did that last little bit today. yahoo!!! That only took me how long?
My cousin Kim from Washington is here to see her sister and her dad. She's going to stop by on Friday afternoon, then a bunch of us cousins will have lunch on Saturday at the Olive Garden.
Oh, my arm is a tad ripped up. Only 3 cuts really. We were trying to trim our cat's claws. They're so long. So we got the first cat done but it was way harder than the other times we've done it. She wanted no part of it but we finally got them done admist much howling and yowling. I always wanted to use that word, admist. Anywho, then I went to get the other cat. She usually has no problem with me picking her up and she didn't even like that. On the kitchen counter she had a hissy fit. Kelly could only get one and a half feet of claws trimmed. She just went crazy. Then she tried to jump down and I didn't want her to because she's so old and crickedy I didn't want her to get hurt, so I tried to help her down. Bad idea. So I'm not sure when I got the cuts, but they hurt! I had about 15, but only 3 really bled and are still visible. My gentle kitty is not nice. So, it's off to the vet with her! She won't give them a hard time. Plus she has a sore on her tail, so she needs to go any way.
Otherwise, it's just hot. I'm keeping busy, more busy than I really want to somehow.
Oh, Kelly's friend Cambria came to stay for a night. They got to spend some time together and then she and I did after he went to sleep. I had the doc appt the next day so we didn't get to spend too much time the next day but we went to lunch. I'm so glad she doesn't like the stupid TV shows Kelly does, it was 2 against one. Yahoo! If you're out there Cambria, thanks, heee heee. We hope she'll come again when she and we have more time. Nope, not one of those we wanted her to go away quicker!
Guess that really is it. Kelly's truck is in the shop, again. It's only two years old. Too many problems. So he has my car and I'm stuck. It's too hot to be out and about any way!
Have a good day everyone!
Sunday, July 09, 2006
hey, i have a picture
Cool huh? Kelly figured out how to do a picture for the bio I had to do. I hate taking pictures! I have a crooked face! And don't tell anyone, but my shirt didn't match my shorts, hee hee. They wanted only a head shot, but that's just too darn close for me.
K, gotta go. Lot's to do tonite! Bye!
K, gotta go. Lot's to do tonite! Bye!
Friday, July 07, 2006
be bop do dooo deee
Not a whole heck of a lot going on. Let's see. I have to send in a short bio by the end of the week, with a picutre. Jpeg?, for the CF Roundtable, a news paper that the USACFA puts out. What the heck is that? I dont know how to send in a picture. Oh no, I'm in trouble already. And I have to write an article about myself. That will be ok. I can just say I'm married and have two cats. Think that's enough?
I am looking forward to the conference so I can get some more info about what is expected of me. I'm also looking forward to the cooler weather up there. I remember last time I went it was wonderful. I really want to live up there. But can you say, expensive?
So, I guess that's all!
Oh, wait. I went to the doctor's yesterday. Was planning on starting the drug study drug again. But noooooo, I have to wait another 28 days. Suck. They have the approval but not the consent. What is the difference you ask? I have to sign the consent and apparently they didn't send it yet.
So another month of no good med's. I hope I don't end up back on IV's because of it. I'm doing 28 days of colymycin (sp?). It is for IV's but I'm doing it nebulized. Hopefully it will hold the bugs at bay for a while. I am highly allergic to this med when used in IV form. But so far no problem with it. It is one of the few drugs that all my bugs are susceptible to.
Ok, now that's all!
Bye
I am looking forward to the conference so I can get some more info about what is expected of me. I'm also looking forward to the cooler weather up there. I remember last time I went it was wonderful. I really want to live up there. But can you say, expensive?
So, I guess that's all!
Oh, wait. I went to the doctor's yesterday. Was planning on starting the drug study drug again. But noooooo, I have to wait another 28 days. Suck. They have the approval but not the consent. What is the difference you ask? I have to sign the consent and apparently they didn't send it yet.
So another month of no good med's. I hope I don't end up back on IV's because of it. I'm doing 28 days of colymycin (sp?). It is for IV's but I'm doing it nebulized. Hopefully it will hold the bugs at bay for a while. I am highly allergic to this med when used in IV form. But so far no problem with it. It is one of the few drugs that all my bugs are susceptible to.
Ok, now that's all!
Bye
Monday, July 03, 2006
The party
This past Saturday was Lynn and Denny's house warming/reception party. It was very nice. I think people had a good time. I know I ate like a cow and paid for it later. But I did get to take left overs home, yummm. Lynn seemed very happy with the turn out and says she wants to have more family parties.
After I came home I was so tired, I didn't do anything but take a nap. Sunday I just couldn't get motivated. I don't know if it's the heat or what. I got up at 10:30ish, took two naps during the day and didn't take a shower till 5 o'clock when I couldn't stand my self any more. I did make dinner, frozen pizzas. Whew, a lot of work:)
Today again, I just felt lathargic. I got a few errands run and cleaned one bathroom. woo who...
Tonite I did get a lot of watering done. The cold water felt good. I think I watered myself as much as the plants. While I was watering I was looking at all the weeds and thinking, I should really pull those. Maybe when it cools off....in October!
I hope when I go to the doctor on Thursday and get back on my med's I won't feel so bad. I'm tired of wearing 02 even at home and tired of being tired. My house needs me to feel better.
I think that is all. Tomorrow is the 4th of July. I always want to go to really see a fireworks show, but it's so hot, when the time comes I don't want to go. At Upland High School, I think I saw a sign that said gates open at 5. Oh my gosh, it doesn't get dark till after 8. What are you supposed to do in this heat for 3 hours? So yes I want to see them, nope not going to. Maybe next year I'll find a beach house to rent and see the one's at the beach. That would be nice.
That's it I guess. Going to go stare at some more TV.
After I came home I was so tired, I didn't do anything but take a nap. Sunday I just couldn't get motivated. I don't know if it's the heat or what. I got up at 10:30ish, took two naps during the day and didn't take a shower till 5 o'clock when I couldn't stand my self any more. I did make dinner, frozen pizzas. Whew, a lot of work:)
Today again, I just felt lathargic. I got a few errands run and cleaned one bathroom. woo who...
Tonite I did get a lot of watering done. The cold water felt good. I think I watered myself as much as the plants. While I was watering I was looking at all the weeds and thinking, I should really pull those. Maybe when it cools off....in October!
I hope when I go to the doctor on Thursday and get back on my med's I won't feel so bad. I'm tired of wearing 02 even at home and tired of being tired. My house needs me to feel better.
I think that is all. Tomorrow is the 4th of July. I always want to go to really see a fireworks show, but it's so hot, when the time comes I don't want to go. At Upland High School, I think I saw a sign that said gates open at 5. Oh my gosh, it doesn't get dark till after 8. What are you supposed to do in this heat for 3 hours? So yes I want to see them, nope not going to. Maybe next year I'll find a beach house to rent and see the one's at the beach. That would be nice.
That's it I guess. Going to go stare at some more TV.
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