It's all Kelly's Fault

Well, I've been doing ok, but not great. Feeling a little winded, but still going about my business. Then today on the phone Kelly asked me if I'd had any bleeds lately, since the 4 a couple weeks ago and the streaks last week. So I told him no I hadn't.
A little later he comes home, early from work ( he had to go to work at midnight tonite, he left about 11:30) anyway, he comes home and wouldn't you know it, I go to lay down for a little afternoon nap and here we go. I feel the gurgling. I run to the bathroom. It was only small but you know, it wouldn't have happened if he hadn't asked me that. I think he reminded my lungs about it. So he's not allowed to ask me any more!

I've got such a busy month coming up. I have 3 weddings, a shower, a 15th b-day party...this is sounding familiar, did I already complain about this? I've already missed a going away party (Allyson's) and a bridal shower (Nicky's) because of feeling like crap...how much more am I going to miss. I try to not be too tired, try to not need to sleep from running fevers, try not to bleed (darn you Kelly, hee e heee) but I don't know how I'll do this month. I even volunteered to have the cousin lunch at my house. Silly girl. But I can do it....I'm sure!

I have another dentist appt next week, I have two doc appts, let's see what else I can fit in.
Ok, I'm just rambling now. It's weird having Kelly gone at this hour. I should be hearing him snoring, instead the cat is. Oh well, let's see if I can go to sleep!

Oh, and by the way, Little Miss Sunshine, yes, Wicker Man, yes, Night Caller, yes, Beerfest, a big fat NOOOOOO. Sorry number one fan!

blog blog blog

I'm up early and nothing to do. I was supposed to go out with a friend, but she can't make it. But I didn't know that until now and I'm already ready. What to do? There's lots of house work to do, but I'm already all ready to go out. There's lots of yard work to do, but it's hot, blah.
I could go to the grocery store. That's always fun. Hmmmm. A movie? Nothing on.
Read my emails. Ok, guess I won't keep you all as bored as I am. Thing is if I sit still, I'll go back to sleep. Maybe I should just do that and re do my make up later.

I had a hard weekend. Felt sick all weekend. I felt like I was short of air and about to pass out all weekend. Not short of breath, which is different. I had this happen in the hospital, but only for a few hours, not for days. Today is better, not gone but better.

What else? I have no idea. I'll think of something really interesting to say and write later.
Bye

Time

Wow, where does the time go? It is almost the end of the month, summer is almost over, even if in Calif. you'd never know by the weather. I can't believe it has been a month since the big event. Can't believe things are going on just as usual. Why is it when you are a kid, summer is so long, sometimes boring and you couldn't wait for something to do, or to go back to school even.
Now, the time runs by. I can't keep up with anything and there are never enough hours!!

Well, enough of that. Kelly is not going to Vandenberg for work, he is sending someone else. So I feel relieved. I really wanted him to go, but was nervous about it. Yesterday he came home and caught me on 02. I told him I had a little blood, not much, but 02 is the only thing I know to do, that and sit still. He had some other obstacles also, so he decided not to go. Then I was able to tell him I'd had some blood streaking Wednesday and Thrusday. Both the days after working in the yard. So last night and tonite I haven't really done anything. I did go to lunch and to the mall with a friend today, and I had a problem with the coughing and needing to get out after being in Cost Plus. I love that store but it is so dusty. So maybe my problem is dust, the dry dirt, dust in the store...hmmmmm.

Not much else going on. Like I said before lots to do. I have 3 wedding coming up, a shower, a dorm warming party, a 15th birthday party (quinceanera), and a block party. Yikes. This and house work, yard work (I am going to get it done!), and try not to bleed. So annoying.

Things are going well

So far so good. No more problems since Friday. I've worked in the yard last night and tonite. I got one planter completely cleaned out, only 3 more to go in the front yard. I had a company come out to give me an estimate of how much to clean up the front and back, fix the automatic sprinkler thing, you know, the thing, and to trim all the trees and bushes. The cost, $1000. I about fainted. But I told them I'd call them back and let them know. I never called back. So I'm trying to do what I can and Kelly will do the mowing and edging and the top parts of the climbing roses this weekend.

Then he leaves for Vandenberg on Sunday for two weeks for work. I'm a tad bit nervous about that. But I'll get thru it. I don't know if I'll do any more working in the yard while he's gone. I don't want to push it with no one home!

So this is short and sweet. No problems health wise. Yahoo!

And the winner is....

Megan...as in Kim's daughter. I forgot about copy/paste. That's not fair.
Tell her the prize is a hearty pat on the back, hee heeeee. Not the way to make for me being the favorite cousin that she doens't know anyway, huh? Did that make sense?

Ok, real letters

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?

Well today has been a good day. I wenwent to the store, I vaccummed, I ran some errands.. And no problmes. yahooo

Now if anyone takes the time to figure this out, I'll crack up!

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.

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.....

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.

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.

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!

Just a quick pointing out that I said 2/3, as in two thirds of a mile, not 3 miles!!! I wish I could go 3 miles.

And, nope, I hate bon bons and I hate coconut! So there!

:)

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!

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?