yicky sicky

Well, got in touch with the doctor today. I have to go to the office in the morning, then get admitted to the hospital for IV's and surgery. I'm so not looking forward to this.
But I"m sick of bleeding so what can ya do.
I have to be there by 10am. I may even have the surgery tomorrow.
Let the fun begin.

Newport Coast weekend

My husband and I went to Newport this weekend. Not just Newport Beach but Newport Beach Coast. Who knew there was another town called that? We stayed at a beautiful condo complex that is a time share. We had to go thru the sells pitch, but the guy was really nice and didn't get too mad at us for not buying. It actually was a better price than I expected. We even thought twice about it!
We did a lot of sleeping in, I've had insomnia and Kelly has been sick, so we slept late. We walked around the Fashion Island mall, had some great food and sat for a while by the water. I could sit and listen to the ocean for hours.
Sadly, the day we left for our weekend, I started the morning having a sore throat. After Friday, I had that , a tounge full of sores, go figure, a headace and very sore legs from walking. Boy I'm really out of shape. So on Saturday after a late start we went to eat at a nice restaurant and half way thru my food, I started bleeding. It was a pretty big bout of hemoptysis, with me using up napkins, getting blood in my food, and scaring a waitress or two trying to get in the bathroom.
I didn't want to even move after that, but we had a long way to walk to get to the car. I had ask Kelly earlier in the day if he would mind if we could go home as I wasn't feeling well. We were going to do that, but not so early and not for this reason! But we went back and packed up and left. I felt so tired I could barely stay awake, but I didn't go to bed till 1ish and still couldn't fall asleep. I don't know what my problem is. I did finally get some sleep.

This morning I woke up feeling not so great. I hurt all over, throat, tounge, legs, even one part of my leg that feels like my bone is exploding. I feel tired and short of breath and today I'm running a small fever. We drove up the 395 to look at some houses my husband's friend told him about. The houses were beautiful, but the area and traffic were both terrible. So we came home and that's about it for today. Kelly went out this evening and I was going to go to sleep, but again, I can't fall asleep.

When I call the doctor tomorrow about the bleed, maybe I'll ask for some sleeping pills also.
So, so much for our romantic weekend. I'm such a bummer of a wife!
Well, maybe this not sleeping can be good, I think I have a test tomorrow in sign language so I'll study tonite.

Bye Bye!

sad

well, i guess my number one fan has abandoned me. no comments and no email for the weekend either. boooo

insomnia

Another night of knowing I need to go to sleep and feeling like I'm ready to go jogging instead. Figuritivly of course! Is that spelled right? Anyway, I have to get up early tomorrow to get ready for my monthly lunch with my female cousins. It is a fun time of catching up with everyone. Not so fun when I can't keep my eyes open because I can't sleep.

You know a couple of posts ago, I wrote about a collections agency calling..well what is the coincedence that today in the mail I got yet another bill for the $4400 from a home health care agency for a bill from 2001. I can't believe it. It's cuz I thought the phone call was about that.
I am so very sick of this. I can't even deal with it now. The last time I talked to them was one year ago asking them to write this off, as I had insurance and the fact that they didn't bill in a timely manner isn't my problem. They never returned my call and now a year later I get another bill. I won't deal with it till next week. I'm busy darn it.

So just when I need to go to sleep, things like this go thru my mind, over and over and over....
Guess I'll go watch TV. !am TV ought to put me to sleep!

not much to say

Well today I didn't accomplish much, that's for sure. I cleaned up the front room and bathroom and that is it. I'm still not able to sleep at night, but then sleep half the day. But I am still too tired to do much. Plus between stomach pains and my hands hurting I just quit. I have to promise myself to get up earlier tomorrow, so I can put a pot roast on to cook. I have to go to the store and I have to clean the bedroom. Think I'll get all that done? Highly doubtful, but I'll try.
Feeling kinda quiet tonite. Nothing really wrong, just have nothing to say.
Hmmmm. ok that's all

better day

Well all my readers...oh, reader...I had a better day today. I finally got some sleep, didn't get up till 1:30 after a few wake ups at 6 am (I only went to bed at 3) 10am, noonish and then finally 1.
I got a little bit of stuff done. I really am one who needs my sleep I guess. I also have decided that what ever happens, money wise with the collections, happens. We'll deal with it, we always do. The one now isn't too big and if the other comes up...I'll figure it out then.
I am so lucky to have a husband who gets as mad as I do, but then will help me to calm down and I get to help him. Who ever my anonomous reader is, you better watch out, my husband will kick your tush if you try anything!

Really, I think about having a tx every day. I can't go there yet. There will be a time I'm sure. I've experienced a way that I don't want to be and when I feel that way again, permanantly, then I'll have a tx. I don't want to wait too long, but I know now is not the time. My husband seems to think that if I have a tx all will be better becasue we'll be taking action. But sometimes taking no action is the thing to do. I feel good, I live my life, what more do I need? There will be a time where i don't feel good and can't do things, then it will be time. I have no need to run and hike and do aerobics. So I don't feel like i"m missing too much. But after tx, I may die. I'm not ready for that. I may die now too...ah heck. Who knows. I just know how I feel today.

Other than that, my computer sucks. It only stays on for a few minutes then turns itself off. I'll have to take the big loud ugly thing I guess...But I kinda like using my hunny's. It has a really big screen, though I don't know what good it does me. This only takes up less than half the page.
Hmmm.
I think I'm rambling now so I guess I'll go read my eamil. It wasn't working earlier tonite, agian.
I dont' know if it's google, the computer or what. So annoying.

Anyway, good night hunny. I love you!

And the beat goes on....

Well, I talked to the collection agency today. They are not calling about what I expected, they are calling about another bill from the same time period. They are calling about a Unilab bill, from September of 2001. I can't believe they are still trying to collect 5 years later. It is so ridiculous. They claimed they've called and left messages many times, then said they spoke to me in 2002. I'm supposed to remember that? They even claimed they sent me all these letters, then rattled off my address at the same time I was speaking, trying to prove how smart they are. Well, they had the wrong address, so obviously no letters came here. It is another bill not paid by Kelly's insurance. When his company got bought out, it seems they just let all this stuff go untaken care of and now the customers are supposed to pay. It is so mean. We paid our premiums for a reason...

I get so upset and mad so very quickly and it is so hard to let it go.

Tonite I went to the mall to walk and I didn't think I was going to make it. Something bothered me as soon as I walked in the mall, I started coughing so bad and having nasal drip, but I thought it was because the store is a mess, it is going out of business and things are a disasterand that there must be a lot of dust in the air. But the more I walked the worse it got. I fianlly went in a restroom to do what I knew of to stop it, but nothing worked. Then I had to try to get back to the other end of the mall. Aside from trying not to wet my pants, I just kept thinking of my friend who coughed so hard she blew a hole in her lung that led to her death. What if something like that happens to me and no one is around to help me. What would I do?

I am so mad at being scared all the time. I used to be so independent. I didn't need anyone. I liked it that way. I had people around me because I wanted to not because I needed to. Now I am afraid to do most things alone....always what if. What if I bleed to death. what if my lung collapses. What if I pass out from lack of air. What if I do wet my pants from coughing so hard. Won't kill me except for dying of humiliation.

I'm mad at stupid companies that don't do their job properly so it hurts others. Medical companies, insurance companies..

I'm mad at being mad. I' m mad at things being hard. I'm mad at being worthless to this world.
I'm mad at being broke. I'm mad at not being able to help financially. I'm mad at not knowing what to do with my life, with my health, with everything.

So it's been another wonderful day in the land of CF ville. Depression is coming on and I'm trying to hold it at bay. It happens so often now. I can feel it coming and try not to give in to it. I cleaned house today, even though all I wanted to do was sit. I went to the mall because Kelly was gone and I didn't want to sit and dwell on things. That got me no where! Depression runs in my family, but I don't know if it is hereditary or if it's just my situation. I started feeling this way before the phone call, that just pushed it along. I hope I can snap out of it quickly. I'm certainly no fun any more. I'm even tired of me. Guess it's a good thing no one is really reading this because they'd stop by now! Whaw, poor me.
Get over it.

very angry

Tonite was a nice night I suppose. A night like most others. I made dinner before I left for school, saw Kelly for about 10 seconds the went to class. All was fine. Then I come home to a voice message that turned my stomach. It was from someone saying it was "in my best interest" to call immediately. I looked the phone number up on the net and it is a collections agency. I have been thru this for so long. I know what it is about, a bill from 2001. They didn't bill my insurance and then literally 2 years later complained to me about it. I have gone thur every sorce I can think of to get it taken care of. We had 100% coverage at that time, the easiest insurance ever. But they didn't bill and now want us to pay $4400. The last time I heard from them was in 11/04. I requested they write it off as it was their mistake. I never heard back from them. Now this, a collections call. This is all it can be. It makes me so angry. I don't have $4400, and shouldn't pay it any way. I paid my insurance and the mistake wasn't mine. I get so tired of fights with insurance. I fought to see a CFF specialist, it was denied, I fought to go to a hospital, I fight to get my meds. Right now fighting another collections that the biller says is all ok, but won't tell the collection agency. I am also fighting to get my diabetic supplies. They say they are no longer covered, but our insurance hasn't changed. But of course the person at my husbands work who is supposed to take care of these things hasn't gotten back to me since Feb. 3. I call, I write, what am I supposed to do. We live literally pay check to paycheck, I can't afford to buy these things. I get so tired of fighting. If everyone would just do what they are supposed to do life would be so much easier. But companies are too big, medical stuff is all about money, not health and people are just numbers. I'll call them tomorrow and find out how to do the dispute process again. No word for 16 months and now they turn me in to collections without so much as a word. I'm tired.

what death teaches you

Hi, My name is Carol. I'm a 43 year old woman and this is my first blog. My wonderful hubby set it up for me cuz he knew I'd never figure it out! I've been trying to figure out what to put on this blog. How much truth to put in it, how much flowery stuff. But tonite I've been thinking, that people who are around death more than others learn so much about life. As a person with Cystic Fibrosis I have lost more than my share of friends to this disease, tho not as many as others. I have also lost my parents, many aunts and uncles, cousins...the list goes on. But it is having CF and knowing many that do, watching many die and knowing it is coming my way much too soon that has taught me what in life is so important; loving is so important, forgiving is important and knowing that time isn't infinite is important. Knowing that you don't have forever to make up with that friend, knowing that you don't have forever to make a difference. Love with all your heart even if it ends in tragedy as it will still be worth it. I know I'm in this mood because I jsut watched "Crossing Jordan" and there was a lot of death tonite. They each had to see a therapist because of the situation and deal with many deep thoughts. and it got me to thinking. Sometimes I'm afraid because I love my husband so much. I'm afraid to be without him and I'm afraid to leave him alone which will more than likely be the case. But even with all that I love...every day I love him more. I think many people with CF or other "terminal" diseases are capeable of love in a way that others are not. Others don't see the point in setting things right, they'll do it later. Or they are just down right mean and don't seem to feel an apology is in order. They don't love or live fully, feeling all emotions. People with a time clock ticking in their head try to do it all now, try to live as if...
So what I'm trying to say with all this rambling is get out there, tell everyone that you know how you feel, don't put off doing the little things that will make someone else happy, it will make a difference. Use the china, drink from the crystal, spill on the couch...ok, don't do that, tee hee.
But you get my point. Ok, lecture over. I'll watch a funny show next time, K?

Carol a person who wants to live

Hi Everyone!

Hi everyone! This is my first blog post. More to come.