just my luck

I just wanted everyone to know that my doctor once again canceled my appointment to speak to him regarding the transplant. He hasn't rescheduled the appointment but I will let everyone know as soon as I can. I'm pretty upset about the whole thing and just wanted to let people know now before anyone starts emailing/calling me wondering how it went. This whole process has been extremely hard both physical and especially emotional for me and of course Michael and Dominic who have to deal with it on a daily basis. Then calling a hour before my appointment I think just tip my emotions over and I had a hard time calming myself down. I cried (a lot and then cried a lot more) but am all out of tears now and simply have to try and pick myself back up and wait yet longer to speak to Dr. Yung. So I will keep everyone posted on when he reschedules but at this time I just really don't want to have to talk to anyone about it or have to tell everyone I'm ok. I'm not ok at the moment but will get over this as I normally do. Again, I'll be all right, I'm just let down and worry that Dr. Yung is putting me on the back burner. Will contact you all in due time. Thanks in advance for not calling and emailing me for now.

3 things I'm happy for:
truthfully it has taken me a long time to think of something to write here because I am so disappointment but I've come up with 3 after all. 1. My husband because he helps me get back on my feet with I'm down like this. 2. God, because I know everything happens for a reason rather I want to admit to it or not. 3. my son for giving me the hug I needed so badly earlier after the doctors office called. He had to be told by Mike to hug me but he did anyway and it felt really good.

To sum the Doctor visit up.

This is what the doctor wrote on my papers to give to Dr. Yung on Tues.

Scleroderma with pulmonary involvement: pt will see Dr. Yung on 31jul07 to discuss transplant. given worsening sxs. I feel this may be the most prudent next step especially given toleration of azathioprine other than increased proteinuria.

For people who don't know what Proteinuria is it's : Proteinuria describes a condition in which urine contains an abnormal amount of protein. Proteins are the building blocks for all body parts, including muscles, bones, hair, and nails. Proteins in your blood also perform a number of important functions. They protect you from infection, help your blood clot, and keep the right amount of fluid circulating throughout your body. As blood passes through healthy kidneys, they filter the waste products out and leave in the things the body needs, like proteins. Most proteins are too big to pass through the kidneys' filters into the urine unless the kidneys are damaged. The main protein that is most likely to appear in urine is albumin. Proteins from the blood can escape into the urine when the filters of the kidney, called glomeruli, are damaged.

So hopefully Tues. Dr. Yung will agree with Dr. Shah and we will go ahead with the next step and get me me on the transplant list. Dr. Shah again said at this point there are only 2 things to do; 1- nothing and let time take it's course and just keep me comfortable (sort of like a hospice thing) or 2-get a tranplant or start the process before I get to weak to be able to handle it.
I told Dr. Shah "Death (not doing anything) is NOT an option and that I will go with plan B and try and get on the transplant list. So keep me in your prayers that this Proteinuria or me getting weaker doesn't keep me from being able to get a transplant.

I'll keep you posted on the next steps come Tues.

until later,
Carmen San Diego

3 things I'm happy about today:

1. No feeling like I am going to throw up, like I did ALL DAY LONG yesterday.
2. My cleaners because they save me from inhaling the fumes of the cleaning products. Plus they always do a great job.
3. My family/friends for being so supportive in this journey of mine living with this terrible disease. With out each of them I wouldn't have come this far I don't think.

34th Birthday

Dinner at Shogun's with great friends. Can't beat it.

3 things I'm happy about 2-day:

1. To be living longer than what the doctors once told me in CT. I knew in my heart I would beat some sort of odds.

2. Having friends to share in my birthday celebration.

3. my husband for giving me a great day of relaxing and dinner with him, Dominic and some of my friends.

"If you got a chance to build a friendship destroy an enemy."

10 inches donated

Well I finally got to my 10 inches to donate to Locks of Love. I am a little shocked at what little hair I have left but I feel so wonderful donating my hair to people who will lose it during their cancer treatments. I can't donate blood or do marathons like others because of my disease so this is the only thing I could do to "give back" to the community. So 2 years of growing it out (ever since we moved to San Diego, this has been my goal) and finally I reached the 10 inches they would allow.
All Dominic and Mike could say was "Wow" so I'm not sure if they really like it or not but I already told them that this was a once in a lifetime experience and that I was already "growing it out". The great thing about doing this is that I got rid of all my old dead split ends and my hair feels really really healthy so I'm happy about that. I'm glad I did it but I must say I think I'll never go this short again. I do like my hair much shorter than it was but this is a bit to short I think. Who knows maybe in a few days I'll grow to love it and I can already tell it's going to be cooler on my neck and less of a hassle in the morning.

Locks of love I hope you enjoy the curls I gave you,
Carmen San Diego
3 things I'm thankful for:

1. Michelle the lady that cut my hair, because she had no clue I was going to do this and she was really patient with trying to give me as much hair as possible and still gave me a stylish look.
2. Ambien because it has been a relief for me this summer since I have insomnia, but I am going to have to ask for a lower dose because what I am on is kicking my butt through out the day.
3. My oxygen man, he really is patient with our request. I so need to give him a thank you note for all that he does for us (me).

The Zabatta's

Chrissie and Danny:

• Danny coming over your first few nights in the cul-de-sac and asking for various tools to fix what housing decided not to.
• To meeting you and you kids as they ran around my front yard stealing my little knick knacks in my little flower pot area.
• To Caya and Cricket (am I right on the name) running around like maniacs in the front yard chasing each other and all of us worried Cricket would bite Caya and/or Caya knocking over the kids since she is so graceful. NOT!!!
• You making me lasagna one night, it was SO good.
• Danny being my “Honey Do” man when Mike was deployed, I mean the poor guy did everything laid my carpet down, hung my blinds, mowed my lawn, to hanging things up I couldn’t reach.
• Watching Big Brother together.
• Driving me to the airport and watching Caya for me when I went to Denver.
• Getting my mail when I was gone.
• Chrissie and I having Conspiracy Theories on all the neighbors. And I do mean all. LOL!!!
• Danny’s most famous line “I will squash you like a grape!”
• Matthew pooping outside and it having carrots in it and then Chrissie hosing it down while I dry heaved the whole time.
• Chrissie slipping and busting your ass in the carport when the kids were playing in the pool.
• Painting Olivia’s nails. She is so precious.
• Matthew dumping a whole bag of Green Doritos on our carpet and then deciding to stomp on them afterwards. Leaving all us adults so shocked we couldn’t move.
• Danny and Mike playing drums and singing to early in the morning keeping the neighborhood up all night (morning).
• Danny being our buff neighbor.
• Watching Dominic for me when I had to go to the doctors or something else.
• Just being one of those friends that I could hang out and do “nothing” with and still feel like I’m doing something,
  
  3 Things I'm Happy for today:

1. Mortin because I woke up with one big Headache.
2. Summer mornings that aren't go hot.
3. Having friends like the ones I dedicated this entry to. People like them make me a better person.

Sunday's Prayer

Dear God,
You are the greatest Friend and joy I have! To be able to come to you in prayer like this is the most beautiful part of my life!
It is not just for me that I want to pray today, but for those who are near and dear to me and about whom I worry about at times. You know what we are facing, and you know most of all the deepest reasons why these things have come to us!
Only you are left. Do be with us in all things at all times. Protect us from enemies and evil. Forgive us from our sins and put love of others in our hearts. Make us all happy in our lives at home, and help us live as you would have wanted us to live. Above all, put love in our hearts for you.
And thank you, for your goodness to them and to me. Thank You for your love and guidance and protection! May we honor you all the days of our lives. And be happy and uplifted even as I feel right now!

Amen.




3 things I’m happy for today:

1. Having another day with my family. Each day I have these days I thank God that he has given me yet another day to be with them. Rather it’s a day I’m sick in bed, not able to get out due to my aches in my joints, my medication or winded and unable to leave the house because I can’t breath. To the days I’m feeling good and able to enjoy the outdoors with my family and/or friends. I thank God he’s has yet given me another day here on earth.
2. Friday because that was one of my better days and I was able to go out to eat and also to a movie with Dominic and Michael. We went to Red Lobster because I was craving lobster and crab legs and we saw Transformers which by the way was a great movie. A little long but so worth the money I believe. I give the movie a B- over all and an A for special effects.
3. My husband because he’s worked 10 straight days and still cares for me when he’s exhausted with a smile on his face. Man I love my sailor.

Sicko, no not the movie me!

I haven't wrote in awhile because of many reasons; but mainly I have been nursing a cold that has taken over a week to finally go away enough for me to focus on my journaling. We went to Vegas which was a great time but by Thursday my body said "OK Carmen you've been around enough smoke for a life time and have done more in 6 days than you have all year. I'm shutting down the house." So Thursday afternoon I had said pretty much that I was done gambling and drinking and seeing Vegas and I was ready to go home whenever Mike and Dominic were. Lucky for me (not really) Friday both of them woke up with sore throats and head colds so we decided to go home a day early. We didn't come home big winners but we did enjoy our time there and that was the most important thing. Sadly, Monday I woke up with their sore throat and it lasted until about Friday and then it went into a head cold which I still have but I'm feeling much, much better today. I still feel crappy and actually cloudy but that is probably all the cold medicine I have been taking finally kicking in all at once.

So when we got home from Vegas we had a ton of mail to go threw and one thing I notice was a post card from UCSD telling me that my appointment on the 3rd has been changed to the 31st. This sucks because it keeps me in limbo another 3 weeks not knowing what we are going to do regarding the transplant or what our next step is but I know that Dr. Yung is a busy guy and I can't really do much about that but be disappointed. So I will see him on the 31st and I'll see my normal pulmonary doctor on the 25Th (both in July not August). I'm anxious to see them to discuss my blood work and the new medicine. I know that my blood work has been coming back a little bit messed up due to my connections but nothing is in the "critical" stages yet. I am just wondering if I am "tolerating" the medicine enough that it won’t affect me from starting the transplant procedure. Some of the things are coming back high when it comes to my kidney's but I haven't got any call from the doctors telling me to stop taking or reduce my medicine intake so rather they have forgot about me and my blood work (which wouldn't surprise me, being that usually I have to be proactive when it comes to getting any results back) or they don't see any concern yet. I haven't been as proactive this time around for a few reasons: 1. I went on vacation and didn't want any bad news to ruin my trip. 2. Like I said nothing has come back critical so I'm not going to stress it too much and 3. I simply don't want know if I could handle more bad news like I've been receiving lately so I am just going to wait it out until I see them in person. 4. I assume (yes I know NEVER do that) that if my blood work and urine was something to be worried about the people who draw my blood/urine would contact my doctors right away. I'm just going to wait it out and hope for the best. I will keep you posted on all my future appointments and what they have to say.

Other than that our summer has been pretty good. Vegas was great, D and I have been enjoying going to bed late and sleeping in later. We've been going to the pool to keep cool a lot and so that has been nice to get out of the house and get some sunshine on my body. I SO need a new bathing suit but can't find one I like. The one I have is too big now that I have lost so much weight (I'm 127.4 now). I hate shopping for bathing suits though. Unless you have a model figure you never are happy 100% or I'm not at least. Knowing me I'll find a bathing suit at the end of the summer and then won’t be able to use it until next year, oh wait I live in San Diego I can pretty much wear one year round. LOL!!! Had to through that in. :) Well that's about it. Now that I'm feeling a bit better I hope to write more in here. I'm going to go enjoy the summer day before it ends.

Until I can think of something else to write,

Carmen San Diego

3 things I'm happy about today:

1. Starting to finally feel better.
2. My husband because man does he do a lot for me especially when I'm sicker than normal.
3. Marc/Donna (Michael's dad and step mom) because they were a huge help when they came to visit this last time.