Good Times and Boxed Whine

Thursday, May 31, 2007

What would happen if you told the absolute truth all day?

I believe that I do tell the truth all day long but everyone is known for telling white lies in order to keep peace or to not come off as a bitch or to hurt someones feelings. I believe if I was to tell the real truth and no white lies I would probably hurt some peoples feelings. Sometimes when I hear people complain about their life and what they are doing with it I want to scream.
Some may complain about wanting to lose weight, while others may complain about their jobs or children, or debt or not getting something accomplishment that they want in life.
Some may say they are going to die because they have the littlest fever or sore throat or cough while others will complain that they are the victims of everyone else's conspiracy theories.
I want to shake these people and tell them, if you want to lose weight quit the chewing. I lost 25 pounds with out exercise, it's called being disciplined and really wanting it. When people complain about their children I want to tell them "Well at least you have children." Some try for years and never are successful.
People who complain about their jobs I want to tell hem "quit" If you are that unhappy then why stay there and make everyone else miserable around you. If you hate your house then move if you are sick stay home so yo don't spread the germs and get us all sick. If your life is that bad then its very simple fix it or shut up.
If I was to tell the real truth when people asked me "Hey how you feeling?" I would rather bore them with all my aches and pains and how sick of being winded and just being tired of being sick and probably end up losing the majority of my friends. I would also end up snapping at someone and telling them "Just because I look good (as they tell me ) doesn't mean I am good" People can be internally ill and still have nice clothes and put on make up and fix their hair. It doesn't mean that in the inside everything is working and ticking the way it should be, it simply means I care about my appearance.
If I was to tell the honest truth I would tell one of my neighbors that their dog is driving me insane with its barking and that I finally sent a letter in to the condo association to complain about it.
I'd tell people to f' off when they looked at me on my medical scooter or wearing oxygen and I would tell my doctors that truthfully I'm sicker than I want to tell them I am but I'm terrified of them running more test and it rather hurting me physically, or getting put on new/more medication or them finding yet something new about my condition.
I'd tell certain people to forget the past because there isn't anything you can do about it and move forward because they are wasting valuable time. That life is too short to hold grudges and to be a hater.
I'd tell certain family members to drink less and others to have a drink to calm their nerves. I'd tell some to eat better and not smoke while other to maybe smoke some pot or pop a Valium to chill.
I'd tell some people they dress like a tramp or too revealing for their age or body type while I would tell others to show off their beautiful curves.
I'd tell people to not to stress over the littlest things and to stop and smell the flowers more often and enjoy life because you just never know when it's going to be taken away from you.
If I told the absolute truth all day I would have a lot of explaining to do when the next day and that I why I am a big believer than a little white lie is better than hurting someones feelings.

Tuesday, May 29, 2007

medical update on me

Hello all,
I just wanted to let you all know that I spoke to my doctors today and they have told me that I have to go on a chemo type of medication again. It's an immunosuppressant drug called Azathioprine (you can get the details on Dr.Shah(my pulmonary doctor) told me that I had to go on this medicine and see if I tolerate it before they can put me on the transplant list. I have to tolerate this medicine before anything because this is a medicine that I'll HAVE to take for the rest of my life after a transplant so I don't reject me new lungs.
So it's a catch 22 to me because I have been on immunosuppressants before (Cytozen and Cellcept) and both of then I didn't tolerate; my kidneys started to act up and had to be taken off of them. I'm nervous because I know of all the side effect ( they really suck, like having the flu and I'm tired more than I am already) and weekly blood work I'll have to go through once again but I also know I have to try this in order to move forward on the process of a transplant.
Good thing is my job will be ending for the summer so I'll have the whole summer to be sick (Lord I hope not) and I have a great support system with Michael's parents, my family and friends in San Diego to help me out during this process if needed.
Anyhow, keep your fingers crossed, wish on a star or pray; what every you do that I tolerate this medicine well so that it wont keep me from getting on the list. I go Friday after work for a complete blood and urine work and will start my new medicine that day as well.

Thanks for your support,

Tuesday, May 22, 2007

I live in a dog pound

So I stayed home today because I had a stomach ache (with "issues") and a migraine. The migraine has been something I've been suffering with ever since they put me on blood pressure medicine. I keep getting headaches and I've tried 2 different types of medicine trying to find something that helps my heart rate, yet gives me no headaches. Nothing so far has helped and actually this new one has given me hot flashes so I feel terrible.

Anyhow, I called out of work today and thought a good day sleep and/or rest will get rid of my headache. I figured, adults are at work, kids at school and the neighborhood would be quiet. Boy I was wrong. Instead the neighborhood was barking. They call the section of condos where we live "dog alley" because every house has a dog but I never realized what the big deal was until I was home today and trying to get rid of my headache. I swear they were barking at nothing. Even my dog who isn't a barker most of the time had to chime in with the rest. Man she's such a follower. Anyhow my day that was suppose to be peaceful and restful ended up being worse because I couldn't get rid of this headache and I only thought of things to get the dogs to shut up. Me thinking hard for ways to deal with the dogs only made my head hurt worse. I think going to work would of been better looking back now. It's now 4:15pm and guess what? I don't hear a damn sound other than my oxygen machine. Such is my luck. Oh well I guess there is always tomorrow. I'll suck it up tomorrow and just take my Motrin and deal with the headache instead of dealing with the dog pound I live in.

I love my neighborhood and dogs to death but I am now starting to worry about the long summer if these dogs continue to bark all the time. We used to have a neighbor who of course didn't have a dog and was like the neighborhood police and would complain about anything. She once even complained to us about Caya whining when we left in the morning during the first few weeks we moved in. Looking back the neighborhood was nice and quiet. I think those dogs knew she meant business. Today is the day I actually missed her being my neighbor.

Until I can think of something else to write,
3 things I'm thankful for:
  1. dark rooms
  2. quiet afternoons
  3. caffeine and Motrin 800 mgs.

Thursday, May 17, 2007


50 things that might not be completely random but are still pretty darn random about YOU.

1. Where is your pet right now?Outside getting a tan.

2. Last time you kissed someone?This morning before I went to work.

3. Name five things you did last night?
1. Watched American Idol
2. ate dinner

3. did my dumbbells for the first time in months
4. picked out what I was going to wear for work
5. slept

4. Last time you consumed alcohol?Mother's Day I had a glass of champagne

5. What color phone do you have?black

6. what are you doing today?I woke up, went to work, came home and did this survey.

7. Where does your best friend live?Fla. and my hubby lives with me also. I have 2 best friends

8. How many kids do you have?1

9. What outfit you have on at this exact moment?pink baby doll top and jean Capri pants

10. What color are your eyes?hazel

11. Have you ever been in love?yes...

12. When was the last time you drank a martini?hmmm...I don't think I really ever had one. Maybe tasted one I think a long long time ago.

13. Did you do any chores today?doing laundry as we speak

14. What are you doing tomorrow? work, cook, hang out with my man and boy. Same thing I do most nights.

15. Do you know someone who likes you?yes I think so.

16. Have you ever had a friend named "Fred, Frank, or Felipe"?yes, yes and yes

17. Name three people you met in the past two months?umm, 3 different doctors does that count?

18. What color is your hair?brown

20. Have you ever said "I Love You" and not meant it?probably when I was young and stupid and didn't know what love really was

21. Do you want a boyfriend/ girlfriend?NOPE have a wonderful husband don't need anyone else

22. What is the closest green object to you?the blanket on my lap

23. Have you ever been teased really bad?Yes. Probably by people now because i wear oxygen.

25. Did you enjoy your last kiss?always

26. Do you believe in ghosts?yes

30. When was the last time you were interested in someone?I'm interested in everyone and everything in different ways.

31. Have you eaten popcorn in the past 48 hours?no, but it sounds good now.

32. Do you miss someone right now?yes my family and friends back on the east coast

33. Do you believe the statement "bigger is always better"?no

34. Do you have a lot of guy friends? I think I have equal guy/gal friends but they are all married friends.

35. Do you have a friend with benefits?nope

36. What is one thing you've learned about life?bad things happen to good people. You just learn to roll with it.

37. Whats your favorite color?black38. Are you jealous of anyone?yes everyone that can breath with out oxygen tubes.

39. Ever fell down the steps?no, I fall up them for some reason.

40. What does your grandma call you?Carm or Carmen probably a few others when I'm bitchy but she's never came out and called me them just thought them I'm sure.

41.What does your best friend call you?Carmen, shug, Carmelina

43. Has a friendship ever turned into something more?yes

44. Has anyone told you that they like you more than a friend?yes

45. What have you eaten today?an apple and a handful of nuts46. Is your hair naturally curly or straight?curly

48. Who was the last person you drove with?Dominic yesterday

49. What are you looking forward to?hopefully my insurance approving the claim for me to start the process of getting new lungs.

50. How are you today?I am OK, been better and worse but still here and that's what counts

3 things I'm thankful for:
  • Knowing my numbers, because this survey obviously doesn't because it's missing a lot of numbers.
  • Having 2 days in a row that I feel pretty good. Knock on wood.
  • my co-workers, they keep me smiling and feeling well.

Wednesday, May 16, 2007

4 things to live by!

"I met this guy while I was in Albuquerque and he has a motto he lives by everyday. He said listen carefully and live by these 4rules:
Drink, Steal, Swear, & Lie. I was shaking my head 'no', but he then told me to listen while he explained his four rules. So here they are:
1.. "Drink" from the "everlasting cup" every day.
2.. "Steal" a moment to help someone that is in worse shape than you are.
3.. "Swear" that you will be a better person today than yesterday.
4.. And last, but not least, when you "lie" down at night, thank God you live in America and have freedom.
I am not as good as I should be; I am not as good as I could be; but THANK GOD, I am better than I used to be."

3 things I'm thankful for:
  1. So far having a cough free morning (knock on wood).
  2. mornings I don't feel pain like today.
  3. paying the bills and still having money left over. Always a great feeling.

Saturday, May 12, 2007

Doctors Visit

I've had quite a lot of doctor visits lately that I don't think I have wrote about. One I went finally to rheumatology and he sent me off for a bunch of lab work and a dexa scan and a new medicine to see if my heart rate and raynauds will get better. To make a long story short with that.

  1. The labs are came back good. Thank God. Both times 2 weeks apart.
  2. Dexa Scan came back with some bone weakening in my hips but hopes that the new calcium pills he prescribed will help strengthen them and that we will probably just moderate now until later.
  3. He put me on an ace inhibitor which had a few side effects. None that caused weight gain, which I refused to take if it did but it did cause a cough. The cough got to be unbearable and so I decided it wasn't worth taking and so I quit taking it about 4 days ago. Plus I was getting bad headaches which he said would go away but never did.

Yesterday I went and saw my Pulmonary doctor Dr. Shah to just talk about my well being and to beg him for a referral to see Dr. Yung who is the doctor at UCSD that does the transplants. Well there wasn't any begging to be done. He could tell that I am deteriorating. He explained that with Scleroderma you can try certain drugs and see if there is a way to slow the process and/or put in in remission but since I've tried everything the only thing that will save my life is a transplant. I really shouldn't say "save my life" because the whole double lung transplant is a life threaten procedure in its own. Plus, I'm very weak these days so I may not make it and/or my body my reject the new lungs so it's really a craps game. But it's a risk I am willing to take. Mike was there and he explained to Dr. Shah that at this time really all we (my family) are doing is watch her deteriorate. That I am always winded, rely on my O2 24/7, and can't seem to get enough sleep. This is all true but it was nice to actually have someone else tell the Doc that as well. I explained to him my cough is exhausting, the joint pain is terrible and I never feel like I am fully rested, and now I'm driving around on a scooter and I'm 33 years old. He could tell we were serious and new I needed to see Dr. Yung. I also told him I quit taking the ace inhibitor and he gave me a different pill to try and help my blood pressure (with out the side effect of coughing) and gave me Ambien to help sleep which I was a little nervous about. I took it last night and I don't feel any more rested than before but maybe tonight will be different.

So Monday I am calling Dr. Yung and hopefully he will see my weight loss (I now weigh 130.8), and see how much worse I have gotten since Sept. 2006 when I saw him last and he will start the process and accept me to be a good candidate for a transplant. I never thought I'd pray for a transplant or to have such a major surgery but I never thought I'd pray every night to just see my son graduate from high school either. I'll keep you posted on my appointment with Dr. Yung and like I said hopefully I can get on the list and get a new chance on life.

Until I can think of something else to write,

Carmen San Diego

3 Things I'm thankful for:

  1. my bed
  2. my wonderful husband who has been a wonderful caregiver to me
  3. my dog who always gives me kisses; like she knows I don't feel well.

Wednesday, May 02, 2007

Bitter Sweet

Well the family has come and gone. Today we are back to the 3 of us; well 4 if you include the laziest dog I know. LOL! It's nice to have the house back to what we call "normal" but I miss them all so much. I get so emotional now a days. I guess I just know that my time is so short and valuable to see my loved ones that I never want to say good bye. My Uncle, Aunt, and Grandma left on Saturday and although I was half asleep when they left, once they did leave the room I couldn't control my tears. I'm just so scared I wont see them again. I mean not just me but my Grandmother is also getting up there in age and with age well anything can happen. I cried myself back to sleep but then I was talking to my mom and again I started to cry telling her I just hate saying goodbye to anyone now because I know my time is running out unless I get a transplant and it is just scary/sad. I don't want to have to say good bye; not now!

I finally got my tears under control for the next few days but again today I had to say goodbye to my parents and Nik and cried all the way to work. I guess people say a good cry is good every know and then but I don't like it, not when it's saying good bye to my love ones. I want to be around a long time and just pray for a transplant.

Other than having to say good bye, their stay was awesome. We talked Brad/Lynn in staying at the house so they wouldn't have to drink and drive and so we really got to let our hair down so to speak. It was truly great seeing them. I never thought anyone would visit us out here other than my parents but they surprised me. The guys went to a baseball game one night and we the girl to a casino. Then we had pork steaks one night which was awesome and played many of games. We laughed, drank and ate way to much and even on the days were I wasn't feeling all that well we hung out at home and made the best of it. They were a huge help around the house with cooking and cleaning which now a days we really appreciate it. With Mike still on recovery and me the way I am it's nice having company that doesn't mind lending a hand here and there.

So our life is back to normal now and it's nice to have Dominic back in his room but I already miss them all and can't wait t0 have them all return. Like my title it is a bitter sweet feeling but I know I will see them again. I will do what ever I need to be able to fight this crappy disease and enjoy my family and friends.

Friday I go to the Pulmonary doctor to beg him to send me back to UCSD because I know that I am not the same and am getting weaker everyday. Hopefully he will agree to give me a referral and the Dr. Mc Grumpy I saw the last time (Dr. Yung) will say it's time to start the process of getting put on the transplant list. I'll keep you posted.

Carmen San Diego

3 things I'm happy for:

  1. my wonderful family for visiting me.
  2. my son who is a real trooper when it comes to giving up his room for company.
  3. air mattress' because with out them we wouldn't of been able to have everyone stay with us.