It all sunk in and..

Well I've had my nap and had a chance to let it all sink in and truthfully I don't feel as upbeat about it all as I was earlier. I'm actually a little scared and down. I'm terrified of the whole operation of a transplant but then again I get worried or panic when I get my teeth cleaned. But I guess these are all emotions that anyone deals with when they go through a divorce, get pregnant, get diagnosed with cancer, accept they are an addict of some sort, or have someone die. Emotions man they can really fuck with someone can't they? Any change in a persons life can have them go through these emotions but it can really be a roller coaster. I know I need to stay positive for my well being but also for my families sake, but its hard at times, to pretend when you really are scared shitless.

Anyways, like anything in my life I will overcome this feeling of fear and pick up where I left off in good spirits. Where there's a incline there is always a decline. I guess that isn't a good thing to say when you are talking about a disease, so how about every negative has a positive, so I just need to find that positive and reflect on that.

I know in my heart that getting put on oxygen will be so much better for me but its they whole idea of people knowing, I'm a handicap that I'm not ready to deal with. I'll get past that I know. I just need to take baby steps to get there.

Thanks for listening,
Carmen

Today

My personal horoscope read:
"In a gorgeous bouquet, it's not the perfect flower that catches your eye first. Rather, it's the bloom that's slightly off-color or the crumpled petal that draws your attention and inspiration. Carry this idea of tragic beauty with you throughout your day, and appreciate how inspiring imperfections can truly be. Learn how to accept what you used to see as 'ugly' ... embrace it as a new type of aesthetic appeal. Be content with the unconventional today. -"

with that said I will share with you this:
I just wanted everyone to know that after getting the result from my last pulmonary function test that my doctor has decided to put me on oxygen. He wants me to use it as much as possible but I told him I wasn't mentally ready for that step yet. He said he can't force me to do anything but strongly suggest that I use it while sleeping and when I exert myself.

We, my doctor, husband, son and I all are looking at this in a positive short term fix. Being on oxygen will give me more energy to do the things I haven't been able to do lately like walk Caya, exercise, help more with the house cleaning and simply not be so winded all the time. But we also realize that this means that a transplant is nearer in my future than any of us really wanted to accept, and also that my disease isn't in remission like we hoped and that it my health is declining slowly.

However, we are staying positive and I will use my O2 at home and while I sleep, but when it comes to leaving the house with it, I am going to have to take baby steps with that. I don't want anyone staring at me or feeling sorry for me, and I think if I'm walking around with tubes up my nose that is exactly what I'll get; (stares and looks of pity or empathy).

So I just wanted to let you all know this and to thank you all again for all your support you've giving me so far. I'm going to let this all sink in over a nap and maybe wake up to a glass of wine. Ha Ha!!!

Have a wonderful weekend,
Carmen

P.S. I'm not actually on oxygen yet. They had to order it and someone comes to my house with it and explains all the details about wearing it and everything. I will not be carrying a large tank around with me like a clown, blowing up balloons. I will have the smaller back-pack one the doctor said so if you have cute book-bags you want to send me I'd love to have some to coordinate with my outfits. I know I shouldn't joke about it but sometimes humor is what gets you through hard times.

Beautifully Stated

As we grow up,

we learn that even the one person

that wasn't supposed to ever let you down probably will.

You will have your heart broken probably more than once

and it's harder every time.

You'll break hearts too,

so remember how it felt when yours was broken.

You'll fight with your best friend.

You'll blame a new love for things an old one did.

You'll cry because time is passing too fast,

and you'll eventually lose someone you love.

So take too many pictures,

laugh too much,

and love like you've never been hurt

because every sixty seconds you spend upset

is a minute of happiness yoU 'll never get back.

Don't be afraid that your life will end,

be afraid that it will never begin.

~anonymous~

The TV talks to me.

Ok, for anyone who doesn't know this, when I'm in bed I am a flipper of channels. Unless one of my shows are on I flip the channels all night long. I have a hard time sleeping through the night. I rarely get a good 6 straight hours of sleep. I'm not sure if its my meds., my acid reflux, my breathing, stress, insomnia or just a combo of all the above, but I can't sleep so I flip through the channels. I should read, because I think that I would fall back to sleep instead of getting involved in a show at 2am or flipping through the channels. Any way I am getting off the point. Lately the past few weeks. I have come across this guy Joel Osteen. I'm not sure if you call it an infomercial or what but he always grabs my attention. Who is this guy? I don't even know what religion he is trying to sell, all I do know is I swear he gets into my head and talks directly at me. For instance last week I was winded in bed and was giving up and wanted to just throw the covers over my head and call it a day. I came across Joel while flipping and he was telling me about this guy who had this lung disease and that he was in the hospital and the guy who shared a room with him would talk about everything outside the window; the people and animals. The guy with the lung disease was to sick to get out of bed to go look outside the window. I think this went on for a few days and sadly the guy who would tell him about what was outside ended up passing. Then one day the guy with the lung disease got stronger to walk over to the window but when he looked out all he was saw a concrete wall to another wing of the hospital. He asked what happened to the view and the nurse told him that the man he shared a room with was blind. So, Joel was telling us (me) to always look on the brighter side. Remember the good and not reflect on the bad.
Then today, I saw him again while flipping the channels. All week I have been struggling with my belief in God. Not so much my belief because I am a big believer that there is a God and that I will one day be in heaven. I was having more problems with why do I have to go through all these health problems? What did I do to deserve this? Why do I have to worry about not living to see my son graduate high school, college, or get married? Why can't I grow old and sit in a rocking chair with my husband and look back to these days? Then Joel talked about how people doubt what the lord can do for them. That he always has a plan. That people should thank God for what he's done for us and not worry because he will help us through everything. He talked about the red sea opening up for people and instantly they worried about food and their next step instead of rejoicing that God helped them through this obstacle and he will help them continually. So he was telling me, that God has got me this far, when some doctors said I wouldn't make it 5 years, he got me past that. That if I start believing in myself and him and focus on the good not the bad that there might be hope for me after all. That God will be there for me, that he has a plan for me and for me not to worry.
I swear this guy gets into my head while I'm sleeping or its a message from God that I always end up on a channel with him on it. I'm not the big Jump up and testify yelling "Alleluia" (sp) type of religious person but I am a believer and I know things happen for a reason. I think that there's a reason why Joel Osteen jumps out at me. I'm not sure what the whole Lakewood church is all about but the things he says catches my attention and I swear the TV or actually he is talking directly at me. I may need to check out his book and see what else he has to say.

Amen, Praise the Lord and all that other stuff, someone has caused me not to flip the channels and listen to a Pastor.
Carmen

Today I turned 33

Today is my birthday and I turned 33. I'm really excited because the first doctor I met regarding my disease said the odds of my living past 5 years is very slim. This year made that 5 years mark and so I say to him "Whatcha got to say now fucka?" I'm still kicking. May be a dull little kick but I'm still around and laughing on the inside and smiling on the outside. So I have decided to right 33 things that I have learned in my old years so far. Here goes:

1. I am much stronger than I want to pretend I am. My husband is a big help in this matter because he pushes me when I want to give up. I hate it at that moment but I thank him later on for not letting me give up on myself.
2. to love my son even if he gets in trouble or drives me crazy at times. Before I know it he'll be out of the house and on his own and so I'll miss these years he drives me up a wall.
3. happy endings are much better than scary but I still prefer a good scary movie anyday.
4. I am a good friend to all my friends and I thank them that they remind me of this every once in awhile.
5. Some days its ok not to take a shower as long as you still put deodorant and powder on. LOL!!
6. a good box of wine is just a good as a good bottle of wine just people need to be adventurous and try it. (I can recommend a few if you want me too. )
7. Even if you lose touch with friends; true friends that is, and you contact them after a long period, its great to feel like they were never out of your life. I've learned this in just the last few weeks.
8. treat everyone like you want to be treated.
9. look at someone in their eyes when they are talking to you.
10. loving someone can be the best thing or the worst thing you ever do regardless its a chance I'd take in a heartbeat.
11. keep in touch with family no matter what. They are you back burners of life.
12. if you've fucked up, man up and apologize.
13. beauty isn't a size 3 its how you carry yourself and how you treat others around you.
14. you don't have to go to church to be religious but God still wants you to visit his house once in awhile.
15. getting into a debate about politics sucks because there is never a real winner. Everyone has there own beliefs.
16. same thing goes with religion.
17. same thing goes with gay/lesbians.
18. same thing goes with how you raise your children.
19. even though I'm tan doesn't mean I don't need spf Everyone needs SPF.
20. return phone calls people appreciate that.
21. same thing goes with emails and snail mail.
22. take time out to have "me" time
23. once in awhile enjoy a sunrise or sunset. It can be better than sex or chocolate if you really get a great day/night.
24. send thank you notes when you get gifts.
25. just because you are diagnosed with a disease doesn't mean you have to have that define who you are.
26. dust doesn't disappear you have to clean to get rid of it.
27. its ok to make mistake as long as you learn from them.
28. learn to say No to people. You can't make everyone happy.
29. try to conquer one fear a year. It's tough but atleast I have a million fears on my list.
30. "just because" emails, calls, flowers or gifts are sometimes better than special occasions.
31. be friends with anyone you want, don't follow a click, its ok to step outside the box.
32. don't be afraid to ask for help.
33. live each day to the fullest because you never know when your time is up.

Good news from the G.I. Doc

My endoscopy with dilation went really well yesterday. All that worry for nothing. I don't even remember what they did to me. They didn't find anything to worry about. I woke up drunk from the meds. and a sore throat but with nothing to be concerned about. (Thank God). They only said that there was a little bit of irritation at the end of my esophagus by my stomach but if I start taking me Prevacid the correct way (I was told I was taking it wrong) that, that should clear it up and I should be alright. So all good news. This morning I only have a sore throat but nothing else is wrong.


Until I can think of something else to write,
Carmen

P.S. Why didn't Erika use the power of veto? I want Dr. Will or Boogie (even more) out of the house. They are a too strong of a team to be in the house together.

Go Kaysar!!!

Go Kaysar, go!!! Like I said my life revolves around CBS three times a week. I was so happy to see Allison leave. I have always hated her, since the last big brother and even amazing race. I was a bit worried about about the BB6 group but with Kaysar as Head of Household, I think they have a clearing this week. Thanks God. I want one of them to win. Probably Howie or Janielle but really anyone from BB6 and I''ll be happy. If Dr. Will wins again I'll be so mad, although that would mean he played another good game. Who knows its still so early in the game, but I'm am jumping up and down that Kaysar got HOH.

You go Boy!!!

Don't worry you haven't missed much

I haven't wrote in here in awhile, not because I was sick or having so much fun I couldn't sit down but simply because I have a boring life. Nothing exciting or new to tell everyone. I feel a bit better from my last entry. I still have a cough a little more than normal and my chest is sore from all the coughing but other than that I feel pretty darn good. I go Monday for more test to be done and yes I'm jumping up and down for them. NOT!!!

My days have been filled with endless laundry, surfing the websites for a new job and filling out countless applications for the school board. So like I said you haven't' missed much by me not writing in here. I did watch Munich and I enjoyed that. That was something I can say that was exciting. Oh and my favorite reality show Big Brother is on again so 3 nights a week my life revolves around CBS, and I plan on venting in here regarding who get the boot and who stays. I love the whole cast of BB6 and it seems like everyone has it out for them. So hopefully they can keep it together to kick everyone else off first. I'm a big Howie and Janielle fan so I hope they do well. Oh and Kaysar too.

So you haven't missed much in my dull life as you can see. I guess I better not bore you anymore with this crap I call journal writing. Until I can think of something else to write.

Carmen

Feeling: pretty good like I already said.

Went and saw it

Well I was so excited to see Pirates of the Caribbean 2 but was a bit let down. It was a good movie but like most movies that have sequels, I didn't like it as much as I hoped. I missed a lot of the humor it had in the first one and I actually thought it dragged a bit. I am a huge Johnny Depp fan and usually I'll like anything with him in it but I just couldn't get into it as much as the first. You leave the movie (sorry if I ruin it for anyone) knowing that there will be a 3rd one but I am wondering if they should of stopped at the first. I hope that the 3rd is better but then again I'm just one person with only one view. I know lots of people who enjoyed it much more than I did but I could of waited personally and saw it on base for free or even on DVD. I had a chance to see that or Superman an I choose Pirates over heroes so its my fault, but next time I'll go for the flying leotard instead of an mysterious pirate.

Until I can think of something else to write,
Carmen

feeling: much, much better finally. Thanks for all your prayers and concerns.

You'd think I'd be happy but....

Well my doctor appointment was very long and didn't really end the was I wanted it to. Actually It went ok I guess, nothing really has changed when they did a x-ray which means my trouble breathing isn't due to a collasped lung or anything. I wanted oxygen but they didn't give it to me. The doctor said I'm still getting enough oxygen to all my body and probably just have a cold or something. They predicted this by drawing blood from my artery the test is called an ABG. For anyone who has never got one of these test done I would try my hardest to not ever get one done. They are very painful and they the corpsman, nurse and doctor tried 8 times and would only get a vein not an artery. It really sucks but its a very accurate reading so I and the doctor really wanted to get it done. I'm getting better with pain these days after everything I've been going through so I let them try over and over again. Dr. Shah the last time put me in tears and felt really back but I told him not to worry just get the right blood. So another Doctor came in and suggested they numb my arm so they could really dig in there and it not hurt so much. So finally after the 8 tries they did do that and finally got it. I've always been a hard stick but never anything like this. They said it had to do with my Raynauds and it clamping down as soon the needle hit the artery but after 4 and half hours later they did get the right blood and it came back that everything was good. Funny but I was a bit upset about that because I really wanted oxygen to help me get through the day, but I guess I should look on the positive side and realize that I'm doing better than my body wants to pretend its doing. They do think that when I walk or exercise or do anything physical that I lose oxygen so they are going to have me do a pulmonary function test on the 17Th and do another test where they measure the amount of oxygen I get when I'm on my feet. If that comes back low then they will put me on oxygen. Until then I suffer with being winded and enjoy life as much as I can sitting down. Sucks but I'm getting used to it.
So I left the doctors office with more medicine that probably wont work, and more appointments for later in the month.

In closing I'm frustrated but am happy I have not collasped a lung again or something else more serious.

Carmen San Diego

Life can really suck at times

Having a lung disease sucks. I hate it and wouldn't wish it on my worst enemy. Today I am sick in bed and pray that God will give me a miracle and take this horrible disease away from me. I hate life when I'm sick and wish that I could just do something to take away my pain. Life isn't suppose to be so hard, physically. If I could have just one wish it'd be for these scarred lungs to be good, new again and to be able to enjoy life to its fullest. I'm only 32 and feel like I'm 82. Life should not be like this. I'm usually in good spirits and positive about my disease but days like this when I can't even get out of bed, its scary and brings me down. Hopefully tomorrow is a better day. I don't wish this on anyone. It sucks so bad to have to try and get in a good breath. Tomorrow I go to the doctors and I am praying that he puts me on O2 because I think at this point I need it or atleast need ii on hand for times like this.

Until I can think of something else to write,
Carmen San Diego

Happy Birthday Grandma.

Today is the 4th of July. And while everyone usually celebrates America with fireworks, BBQ's, beach/pool parties and booze; I often remember my Grandma who I called Muh. Today is her birthday. She's passed on now and I believe if she was still alive she would of been around 75. She died of cancer of the pancreas when I was only 20 I believe. It took her life so fast that I never really got to tell her goodbye. Actually I think know matter how fast it (the cancer) took her life I still wouldn't of been able to say goodbye the way I wish I could of done looking back now. She lived on one coast and me the other. I was also 20 which means I was so wrapped up in me and my life that you never stop and smell the roses so to say. At 20 you don't appreciate everything that someone does for you, or atleast I didn't. Now that I am a bit older (okay 12 years older) I regret not seeing her more often. Don't get me wrong, she was a pill and very old fashion in things. One fond memory that comes to mind is just like in 16 candles, when the Grandma feels up Molly Ringwold (SP) well my Grandma did that a few times as well. Another thing I remember that was so not cool then but now looking back its funny is when I got my period she wanted to buy me one of those old fashion belts that held the pad in place I guess. Those were way before my time and when I told her that pads come with sticky stuff now she didn't believe that it would work.
It was her way or the highway and now as a some what mature adult I see a lot of her in me.
There is so many things I wish she could of seen that she missed out on like her Great Grandson, and Mike and just how I have matured in life. I hope I would of made her proud in the decisions I've made for my life, and mostly I wish at times when I'm sick or not feeling well that she was here to take care of me. I remember spending lots of time with her as a kid. She took me everywhere and I remember being able to play dress up with my cousin with her high heel shoes and fluffy robes and make up. I think she is the one that got me into the girly things like make up and nail polish because I can't recall a day when she didn't have either one on. She was great, typical grandma I guess, loved to cook and always looked her best. So now when it's 4th of July and I'm looking up in the sky at the fireworks, I also look for the first star I see and smile because I know that, that is her looking down on me.

I miss you Muh and I know one day we will be together again. Until then I'll just remember all the times we had and look up in the sky for my star.

Carmen

Dumb movie

Ok so I love scary movies, and I talked my husband into watching The Hills have Eyes. Well it was gory to say the least but one of the dumbest B rated horror movies I've seen. I did watch the whole thing with my husband talking his way through all the scary parts I guess to ease his fear, but I wouldn't recommend anyone wasting their hard earned money on this movie. Funny we make fun of Dominic for talking all the time during scary movies but now I know where he gets it, his father does the same thing. LOL!!! For now on I'll have to simply watch them with my girlfriends, by myself or suck it up and listen to them talk the whole time something scary is about to happen.

In conclusion we have decided to end the night with a light humor movie; The Wedding Crashers. Now this is a must see to me if you haven't seen it already. This will be about the 10th time we've watched it but it will keep my hubby from having nightmares tonight.

Until I can think of something else to write,
Carmen
Mood: great
Feeling: I am feeling much better today than the past few days. Knock on wood!!!

Back from the dead.

Well I'm back from vacation and now I'm trying to get my life back into the swing of things. I had a great time visiting the east coast seeing old friends. I really made me miss the east coast so much seeing all my friends again. I wish I was strong enough to do more than what we did, which was pretty much hang out but it was so nice just to catch up from a year apart and see them again. Some friends I may never see again. Not because we aren't friends anymore but everyone just is moving to different areas of the world and it will get harder and harder to see them. I also know that my health isn't getting any better and I just never hold my breath on when my time is up.

I don't fear death. Well I do in a way because I simply just want to go in my sleep. I don't want to go through chest tubes or surgeries or go while someone is pounding on my chest to save me. I want to go peacefully and with out an struggle. I also fear about my family. I don't want Mike and Dominic or any of my extended family to be sad or miss me. Well I want you all to miss me but not so bad that you can't move on with your lives. Everyone dies and so one day I'll see you all up in heaven; or hell where ever the big man thinks I or we belong.

I am talking of death not to sadden anyone's weekend, although death is always a sad thing but because I've been keeping a journal on my breathing patterns and I've come to see that I have been having more bad days than good. It's getting tougher each day and I'm finally starting to realize that being on oxygen isn't to far from the future. I am actually looking forward to being put on it because I think I will be able to do more things like workout and go for walks again that now I'm unable to do. I am just not at the point where I want to be seen as a handicap to the public. I don't want jobs to not hire me because I wear a tube around my nose or people to feel empathy for me because they see how much I've changed. Oxygen or not, I'm still the same person on the inside. Spunky, funny and like to have a good time. I go to Dr. Shah on 7/7 and I am going to share with him my concerns of daily life becoming more of a struggle and see what he has to say. I also go 7/31 to Dr. Yung who is at UCSD and is a specialist on Scleraderma and Pulmonary Fibrosis and talk to him about new meds. and the start of putting me on a transplant list. I really think that at this time its time to really consider a transplant or try a new medicine that may help my lungs a little.

On a lighter note. Michael, Dominic and I went to the Goo Goo Dolls, and Counting Crows concert. It was an awesome show. I LOVE the Counting Crows and Mike and D love the Goo Goo Dolls so we all were happy. It was a late night for us and since Dominic is doing summer school he actually fell asleep during Counting Crows but its ok, it was something to remember anyhow... all of us at a concert together. It was Dominic's first concert and I think he enjoyed it and doing something that we all can enjoy together.

Well I'm sure I will be writing more this weekend I just felt like I had to write something so you all knew I was home again and doing pretty well. Now, sadly I need to clean the house and do laundry. It sucks just thinking about it but I got these new all natural products that are suppose to be healthier for you and who knows maybe it'll help my breathing in the long run. So, I'm looking forward to detoxing my house and hopefully I will not be so winded afterwards. Wish me luck. Oh yeah the stuff is called Melaleuca and their site is www.melaleuca.com for anyone who is interested in it. My friends that use it swear by it and say their asthma is under control if not gone; so at this point I'll try just about anything.

Until I can think of something else to write,
Carmen San Diego

• mood: a little sad but not for any real reason. Just thinking about the future and me saddens me and so that is why I feel this way.
• If: If you were to decide what legal rights gays and lesbians should have with regard to marriage and children, what would they be? I feel every human has the same rights regardless of color, sex or sexuality. So gays should have the same rights as I do as an American and being heterosexual.