So much for improving

Well, I woke up this morning shivering. I was awake for quite a while before I could force my self to get out of bed because I was so cold. Kelly was up and in tee shirt and shorts so I knew it wasn't that cold. My temp was 100.8. I also was feeling very tight. Not congested but like there was a lot of inflammation. I kept my 02 on. I ate breakfast and by then was shivering so badly, I wasn't sure whether to call Kelly for a blanket or what. But I went in the bathroom, got the little heater and just sat there till I was warm. Finally I came out and just sat for a while. I have worn my 02 all day almost. I have felt bad all day. My hips, back, ribs, knee's and elbows hurt. Laying on my bed felt like laying on bricks. Kelly and I went out to eat and all was the same. Got home and my temp was back up. About 9pm, I had a small bleed and a temp. Of course at dinner we were saying it's been 5 weeks since I've bled. Us and our big mouths.

On top of this, Kelly is sad. A friend of his died yesterday while waiting for a liver transplant. He didn't tell me until today. My depression was lifting, but after today, I don't know. I think I'll just sleep all day tomorrow and forget it.

Trying to improve

I read another blog of a person with CF. Her name is Debbie. She has gone many months without getting sick and is feeling so great. I wrote to her and ask her how she has done this.
This is what she wrote back. Debbie, I hope you don't mind that I publish this.


So how to explain the improvement.....well, about Jan 2-3, I was pretty freaked out.....knew I had to do what I could to stay in good mental health
I went to counseling
I read a lot of books
I asked for help, very hard to do as you know! But people came and cleaned my house, did errands for me, etc.
I began meditating and visualizing
I watched funny movies
I talked to people
i began taking some vitamin and fruit supplements
And I began walking. In Jan of 2005 I could only walk for 4 minutes including 1 break. I am now up to 24 minutes without stopping.
I did all my treatments, I took all my meds
I went and sat outside every day even in winter and only for a few minutes but it helped
I changed my pajamas everyday, and tried to shower every other day at least
I drank, and still do, a scandishake every night


So, thank you Debbie for these suggestions. Also thank you Bonnie (another person with CF) for your input. I will try to put some of this, if not all, into action. If anyone reads the comments on the last post I wrote, you can click on their name and read their blogs. Very great people.


I got a call from my nurse yesterday saying she needed to talk to me about my synergie study. That doesn't sound like good news. But she also said she wanted to talk to me about trying colymycin nebulized. That sounds like a good idea to me since I can't take Tobi. It would be on the off months of the study drug Aztreonam. The only problem is that I am allergic to Coly. Severe itching, like rip your skin off itching. Hopefully the nebulized coly will not be as strong in my blood stream and I'll be able to handle it.

So, I have to go now and do my breathing treatments, pills, shots, inhalers, and maybe even a vest. See, I am going to start now. After this I'll make Kelly's lunch, pick up the house and read a bit. So, me first. Oh, I need to go to the grocery store, shoot, it's 10:30. Darn it. See, ok, maybe after the store I'll do all this. YIkes.

same story different day

Boy I bet you all are tired of reading this stuff. Let's see. I've been depressed since Saturday. There is really no reason, just am. I get up in the middle of the night and cry, no reason, just do.
I try to keep myself busy during the day so I don't notice being alone and so I'll be tired at night. But I have been having terrible insomnia again. I go to sleep very late and then after only a couple of hours I wake up. I'm so tired but can't go back to sleep. It is so frustrating.
Right now I have more time alone and I have lots to do. Much housework or closet cleaning that really needs to be done. I want to work on the guest room. I have a bunch of weeds to pull. The list of chores is endless but I don't want to do them. I can work on my bag, I really want to finish it but I don't. I can knit and watch TV but I'm sick of that. I can go to the mall and spend my gift certificates, but it's so hard carrying 02. It makes my back just ache. I can go Orchard and buy yard stuff, but I don't want to. I don't know what I want to do.

Last night I took my friend that is in the hospital a goodie bag. I hoped it would just give her a little smile and something to do. She is in the hospital with CF, pulmonary hypertension and waiting for a transplant. She is #1 on the list at USC. She is my age and just got married in March. She workes on an adult CF newsletter, is so sweet. I just wanted to do something nice. I brought a book to read, crossword puzzle book, a drawing pad and colored pencils, a coloring book and crayons (in case she is artistically challenged like me) a little cross stitch a bag of candy and a beany baby and a game of Uno. I figured if she didn't want to eat the candy she could use it to bribe the nurses! When I got to USC, she and her brand new husband were sitting outside on a bench. So I gave her the bag and we talked for a while. She didn't once look in the bag and when I left she and her husband weren't looking in it still. I hope she isn't mad that I did that, or worried about germs. I think others are much more cautious than I am. I don't think I would have left germs behind. Was I being stupid? I hope I didn't do something wrong. She seemed a little embarrassed that I was there. Maybe she and her husband were discussing "things" and I interrupted. Anyway, maybe it's just my frame of mind right now too. Who knows.

I had lunch with my other friend who is also sick, not with CF though. He is moving next month and I am so worried about him. I hope he gets the proper medical care and insists on treatment right away. I don't see him much here now, but I will miss him.

Tonite I'm running a temp again. 100.6. I've only been off of IV"s since April 27. I hope it is just a one day thing. It is hot out.

So, I've been wanting to write, but feel like I have to write something deep or exciting because people read this. But I guess it is for me, not for others. Kelly reminded me of that. So if no one wants to read because of the same old boring story over and over, I totally understand!!
I get tired of me but don't seem to be able to get a handle on it. I want to plant flowers and make my yard look great. I don't think I should be in the dirt that much, especially if I'm going to run a fever. I want to feel like doing all kinds of things, but I don't. More bills have come up that are not being paid, for my first surgery in Feb. One for $1200 and one for $4836. The insurance says they have not been sent the proper information. Does that story sound familiar? But this time it is the insurance telling me, not the SHPS that supposedly makes the decisions. So who's making the decision on this one? It'll get settled I'm sure. I was bleeding like a stuck pig for goodness sake. Ok, I guess I'll quit. I just feel like this is my only connection to anyone right now. I surely can't call and whine all the time! Well, back to TV.

Well, the good news is that the $38,000 bill was approved so we won't have to fight that any more. The bad news is that the company that sends my home IV's called and said my insurance says I've been cancelled since 2003. This is the same company that says I owe them $4400. Are they now going to tell me they haven't been paid since 2003? I ask about the letter I sent them regarding that bill and of course the person I needed to talk to can't come to the phone. How interesting!

One step forward, two back.
Deep sigh....

owie!!!

This could have been a really great blog. It could have been full of drama and crisis. It could have been a really great story. You see, I woke up Monday morning in so much pain I couldn't sit up. Or let me rephrase that, I didn't try. I was sleepy. It was dark out and I hurt so bad in my left lower rib cage area. No matter how I tried to lay it hurt. But you know me, I went back to sleep any way. When I woke up later it still hurt, a lot. I took a hot shower, it didn't help. I took ibuproen and bextra (yes I'll now have a stroke). It didn't help. So finally I gave in and called the doc's because I didn't know if it was my lung or my muscle.
Well, they never called me back. I went out with Kelly Monday night and as long as I sat very still and didn't say much, it didn't hurt.

Well, Tuesday morning it still hurt, a lot. The doctors office called about 11. They said to come in and have an x-ray. It could be a pneumothorax (collapsed lung) or a cracked rib (never thought of that) or a muscle.

So I drove out and got Kelly from work so he could help me walk from the doctors office to the x-ray building and back. It took forever since I didn't have an appt. But it could have gone something like this. Oh no, get to ER now. You have a pneumothroax, you need a chest tube now. So they cut a spot between my ribs and shoved the tube in. It hurt more than all 12 children I had....

Oh, that didn't happen. But it could have been like this. You have 3, no 4, no FIVE cracked ribs. Are you sure you coughed that hard or did you have a fight with someone? No? Then your osteoporosis is so bad we are going to put you on strenous weight lifting soon as your ribs heal but for 5, no 6 months you can't do anything that could cause the ribs to further break and puncture a lung.....

Ok, that didn't happen either. How about, we can't see anything wrong with your lungs or any cracks on your ribs. You probably sprained, yes sprained a muscle while coughing in your sleep. I say,"I don't cough in my sleep." My husband is behind me betraying me with a shaking head, "yes you do." So take something for pain and go home. I got a perscription for a pain killer, that isn't working by the way and went home. All this took from 12 when I left the house to 6:30 returning home. I'm whoooped. Yes, that really did happen.

See, weren't the other stories better? Not very fun to happen, but more fun to write about! And I was finally going to get my hair done today. ERrr. So the pain patch they gave me is helping a little with the strong stabbing pain, but is not helping with the constant pain. And since I know I'm holding my self weirdly because my back hurts, now my back on the other side is hurting. I give up! I think they should have given me a muscle relaxer. That would probably help more.
Oh well, didn't think of that while I was there. Just felt stupid for even going in. The doctor was very nice and assured me I did the right thing because on the phone we couldn't tell what it was.
Ok, so I'm only a half of a goober. Think I'll have to pay the guy who lugged my 02 around for me all day and missed half a day of work?

No more funk

Well, not much has changed but my mood. I'm in the drug study, yahoo. No problems.
So that's a very good thing. I even get paid a little bit.
hmmmm, la la la, thinking, thinking,
not much else to say I guess. Talked to my cousin Kim, Oregon Kim as opposed to cousin Kim that is Washington Kim, for a while, that was nice. Get to sleep in tomorrow...um, yeppers, so,
um,...ok.
Guess that's it. I'm either brain dead or boring! I think boring!
Bye bye

In a funk

So, nothing much is going on but I'm in a funk today. I went to lunch and a movie with my cousin Kitty and a friend Darcie. We had a nice time. I got birthday presents too!! I love presents! I did some knitting...I changed yarn and am actually doing it now! Cool. But somehow I'm in a funk. I think I'm getting ready for tomorrow. Back to phone calls for the insurance. I've been on the phone for literally hours this week and so far the virdict is, one hand doesn't know what the other hand is doing and so they have decided that I didn't qualify to be in the hospital. Even though 3 of the 5 days were approved, they do only one blanket statement and if any is denied, it is all denied and there is no "clinical" findings that I should have been in the hospital after day 3. Hmmmm, guess not being able to walk across the room doesn't count. Anyway, the person I've spent hours with finally told me she isn't really the case manager anyway and to call someone else. So I get to start over.

I also sent a letter to the comopany wanting $4400 on April 11 and have not heard from them so I need to call them.

Also need to pick out our new insurance, that's such a fun guessing game.

Let's see, I need to call the collections office and see how they are, and I have an appt. at the doctors office tomorrow to see if they'll let me back in on the drug study. I sure hope so. I believe that the drug was helping me. But there is some issue with the fact that I had to use 02 after both surgeries and that may disqualify me. Amazing that people who really need the drug are disqualified becasue they really need it. I understand they have to follow protocal to get drug approval some day, but geez.

And I think most of all, I'm worried about next week. There seems to be a correlation between my lungs and arteries bleeding when it's my cycle. It has happened 3 months in a row we found out. It may have something to do with hormones. So starting Sunday, I'll have to be very careful again to not do anything that can set it off such as lifting, or bending over or moving too fast, or smelling chemicals or....who knows! I just hate the bleeding, yea both kinds, tee hee! But the lungs is just too scary.

Anyway, nothing really is new, just the same ole junk. Some days just bothers me more than others. For some reason today is that day.

For all you cousins out there, I'll be more chipper by cousin lunch, though I may just sit and not move. I'm not supposed to go out next week! I may fianlly get to those movies that Merle gave me to watch.

Oh, my sister came over again this week and we did more on my bag. I'm almost done. It's not bad, but funny with my crooked seams. A born seamstress I am not! But it's fun. She took me out to Red Lobster for my b-day dinner. Ymmmm. Love those 240 calorie biscuts!
Ok that's really all now. Talk to you later!

Thought provoking

I have been reading the book The Anatomy of Hope by Jerome Groopman, MD. It was sent to me by my cousin Kim in Washington. I really thought it was not for me, not about me and wouldn't help me. As I read along, it was very interesting if for no other reason than I like reading about people's stories. I'm a person who likes to listen, to watch and to read about other people.
So as I'm reading all I keep thinking to myself is, the stories are great but they don't pertain to me. This book about how the doctor learned about hope and how it effects treatment is all about cancer patients. It is about people who have a disease that is possibly curable, however remote that possibility is, there is a chance of a cure or at least remission. So of course these people have room for hope.

My disease has no cure. Not that the chance is remote, it is not there. Nothing is revesible, nothing will get better. The ravages done to my lungs, my pancrease, my gall bladder (which is gone) cannot be changed, cannot be fixed, cannot go into remission or be cured. It is progressive and will follow it's course. Yes, some people's CF path moves slower than others, but there IS NO CURE. So what the heck can this book tell me?

I'm not quite finished with it yet, but there is something that has been going around in my mind for a couple of days now. I told Kelly about it at dinner tonite. There was one man, Dan, who had a cancer that was curable. And fairly easily so. Yes a tough round of chemo and radiation but curable. But this man knew he was going to die, refused treatment no matter what they said to him and was just prepared to die. They sent in the priest and the psychiatrist and no one could figure out what his despondancy and refusal of treatment was all about. Then by accident his wife figured it out, without even knowing she did. See, Dan was in the military and had very good military friends from long ago. One of them died from the same cancer he had. It was a horrific, painful death. The doctors told him also he could be cured. But it never happened and he died an awful death.

Now this was many years earlier and treatments had changed so much since then, they know so much more now...and in talking to him about his friend figured out what he needed to hear. That he was in control of his treatment and that he could stop it at any time. That they would not let him end up like his friend. They realized that he had in his head that he was going to be like his friend no matter what and they had to get past what he had stuck in his mind. He had identified his disease path as the same as his friend's. So they convinced him to go only one step at a time with the knowledge that at any time he could stop if he felt it was no longer something he wanted to do and he got better. They often had to remind him HE WAS NOT HIS FRIEND. He was himself. He did get better and lived some 30 years more I think.

What I took from that and had to process for a while is this. You all know I struggle with the idea of transplant. I believe I will die. Why do I believe that? Because it is what I hear over and over from the people I call my support group and friends on an on line mail group. There are about 600 members on this list and I get anywhere from 20 to 60 messages a day. Many aren't to me directly or don't pertain to me, but they are always filled with information, compassion, kindness, happiness, yes hope, sorrow, and death. These are people I say things to that I would to no others and they understand. They either have CF, or their friends, family member or children do.

But the down side is, that as a support group, we all write in when we need help, hand holding or just to vent our frustrations, fears or grief. And this grief happens many many many times about death from a transplant. Be it the person never gets out of the hospital, or goes home only to be healthy for a month and then dies, or has horrible side effects and doesn't live a full life...The list goes on. Of the people who have a transplant that goes well, I can only count on a few fingers. Or there are others but we never hear from them because they stop "needing" the list. Or they just read but don't post any more. So you at times feel inundated with all the bad things that happen from transplant.

So I've decided I need to start trying to focus on the positives instead of believing that the worst will happen to me. I'm not those people. It won't take a day, but I'll work on it. I will still read and support those that need it, as they will me. But I will ask for those who are doing well to weigh in. To let us hear from them too. I will start going to the support group at USC as the one time I went 3 months ago, it was all annoyingly upbeat people. :) I have a book about succussful transplant stories, many organs not just lung, but I've never read it. I truly put it aside because to me it was so much bull.....

Like Dan, I have identified with the people or person who died. The agony that person was in and I have given up all hope that it can be different for me. I will try to recover that hope.
Now again, Dan had it a bit easier...he had a cure. CF can't be cured and when it's time for a transplant that won't be a cure either. It's hard work and may not work at all. But there's a chance.
A chance to live. I will fight tooth and nail to get healthier so I can put this off as long as I can, you know gives me a longer time to make this transition :) But I will be healthy then also for the surgery as that too can save your life.

So, hope this wasn't too long and rambly. Just something I have to work on. I don't know if I've written it well enough, but I hope this makes sense to someone!

Insurance strikes again

Wow, I was still in a good mood. I am making this my birthday weekend instead of just my birthday on Sunday. I went to have a facial today that I've been wanting to do for some time. My freind Michelle got me a gift certificate for xmas but I haven't been able to use it till now.
So I did that, then went out with Kelly to walk around the mall, took his truck into the shop, went out to eat. Then when we got home I had the mail to open and I got 4 birthday cards. Yahoo.
Then I stupidly opened the envelope from BlueCross/Blue Shield. It was to inform me that the information they were provided has shown no justification for me being in the hospital and that they won't pay the bill. They did pay the $85 portion for education...but have denied the part for the hospitalization. It says I may owe provider a mere $38,000 and some odd dollars. Again, I am so very tired of this. Still haven't gotten the correct test strips, still have one bill in collections, one that is on the way there and one that we haven't answered the phone call for yet.
And, the statement doesn't even have the correct dates on it. How hard is it to get your insurance to do what they are supposed to do? I give up. I told Kelly he needs to divorce me, put the house and the cars in his name only, I'll use only medicare and then just not pay anything and they can't ruin his credit. Think it'll work?