Feels like I just got here!!!

I know I still have a little more than two weeks left in Cali, but I feel like I just got here, AND I feel like time is going to darn fast! Slow down time! Slow down!!

I have had so much fun since I got here! the only bad part so far has been the ride from the airport. lol.

after my niece and nephew's party, we went back to my momma's in a suburb in Riverside County. My sister and her bf were talking about going to the beach and then Disney the next day all I heard beach!!!  Of course I wanted to go! So we return to the O.C. and although we left hours and hours after we were supposed to be there, we made it, but without enough time to go to the beach :( We did however go to Disneyland!! so much fun seeing it all through the eyes of my niece and nephew! I loved how excited they were, even though they have season passes and usually go at least once a month, they were so excited with the rides and having so many aunties with them, there were 3 of us aunties there, one uncle, daddy and the kids :-)  We had SUCH fun!

I was going to head back to Riverside County the next day but decided I was having too much fun with my sis and my Godmother, that I didn't want to go back... so I stayed a few extra days here. :-)

I'm afraid that I'm going to get bored with my mom.. not that she is boring, not by any stretch of the imagination, but it's a small city and not much to do.. except maybe go to the vineyards and sample the wines. lol. :-)

So.. tomorrow I go to momma's and I'm really looking forward to seeing her!!!

I'm SO LOOKING FORWARD to the Support Group Meetings coming up! WEEEEEEEE

California - Day One

I flew into LAX last night at about 8 p.m.

The shuttle service I used to get to my sister's place in Buena Park was HORRIBLE!!  the driver did 3 laps around the airport looking for more fares, and then stopped for 10 minutes to enter all SEVEN rider's addresses in the GPS. But it was really for nothing! He couldn't figure out when the GPS was saying OR he didn't really care.

Finally after an hour and a half of getting on the shuttle, we left the airport.  So he's driving us around, nearly hitting two cars getting onto the freeway, scaring all of us that were in the very back of the van. After driving on the freeway for nearly 1/2 hour, he gets off the freeway, turns right, and decides, oh! I need to make a u-turn. He gets right back on the freeway we were on in the same direction! After doing this 3 or 4 times, the driver decides to take the scenic route, going through residential areas. After asking someone, is this your area, they said no, so he finally decides to follow the GPS, which we can all hear clearly telling him which way to go, he gets back onto the main street and heads down about a mile or two and finally drops off the first passenger.

Heading back to the freeway, he swerves nearly hitting another car, since the driver is half into their lane. Everyone in the van is complaining under their breath and when someone asks what the hell is going on, the driver starts very sternly telling us it's not his fault, he doesn't know the city, etc etc etc.

Finally, after boarding at 8:00 pm, I arrived in Buena Park at about 11:00 p.m.


I'm going to forget this horrible start to my month long vacay, after I write an email describing the horrible service we received, and demand my money back!

My first day in Cali was AWESOME!!! Woke up at my sister's place and had coffee / crystal lite, until she had to leave for work. My godmother picked me up and I spent the day with her, my uncle and my nephew! awesome awesome first day to my vacation!

I'm home! :-)

Sticks and Stones

We all know the little chant..

Sticks and Stones may break my bones

But words will never hurt me. 

Every little one has said it at one point or another, they may have said it out loud. they might have even yelled it, but how many times were these words uttered under their breathe? Or like a chant over and over and over, as they were being taunted, teased and even bullied?

Words do hurt.

Sticks and Stones may break my bones

But words will  hurt me. 

Happy Birthday *******Luzy!!!*****

Today, 17 years ago, my beautiful daughter Luzy was born! She was so tiny. So beautiful! Weighing in at just barely over 6 pounds, she was my largest baby, but still so small. I'm amazed at how she has grown and matured! I'm in awe of her and all that she does!

I love her so much and can't wait to see her during the summer!

I love you Luzy!

Exercising, Eating right and Tio Tony

My uncle, Tio Tony, passed away a few weeks ago from a heart attack due to diabetes It has been a very very sad time for my family, especially my mom, her youngest brother. 

This got me thinking, as it naturally should,  of how fragile my life is. How I've been using and abusing my body and taking life for granted. Yes, even though I'm chronically ill, even though I have been at death's door several times, I still take my life for granted. I've been sick for so long, I think, I forget about how sick I am inside. There's no outward signs of my illness. Nothing to really remind me how sick I am, unless I start to walk quickly, or on an incline, walk up a flight of stairs, or lift a heavy object. 

So I decided recently to give up Coca-Cola. Do you know how hard it is to give up something you've been drinking for 20 some odd years? Every morning, I'd wake up and drink my caffeine.. cold. Afternoon I'd have a coke, another with dinner, and of course, I'd have a coke right before bed.  
When I got pregnant, I stopped drinking Coke so that the caffeine wouldn't harm the fetus. I got such horrible headaches from not drinking it, I had to go on Beta Blockers, until I was used to not having it. 

After I got sick with Pulmonary Hypertension, I started having palpitations, and was told it was because of the caffeine. Of course, I stopped drinking coke, but went to Sprite, another soda.  After several years without Coke or any caffeinated drinks, I drank a coke and found I was alright! But instead of drinking 3-4 a day, I drank one a day, for fear of the palpitations. So one a day it's been for a while. 

However, with the news that Tio Tony died because of his diabetes, it gave me pause. My mother always told me, Tio Tony would drink 3-4 Coca-Colas everyday. And in Mexico, they use really strong uber yummy sugar in the Cokes! (we have found Mexican Cokes here in the Latino stores and they are so amazingly good!!!)   

So I decided to give up Cokes. Any sodas actually. I've been drinking crystal light or Sugar free Hawaiian Punch.  I have had one  or two cokes since giving them up. During a really stressful time we just went thru, I had to watch Ellie for hours and hours and I was so exhausted, I turned to Coke to wake me up and give me the kick I needed. Plus, it's almost like a drug, you know? I mean, I wake up and I want COKE. I take my pills in the morning and I really want to wash them down with a Coke. I want a coke so bad sometimes. Right now, writing this, I want a coke, but instead I'm reaching for a Crystal Light. 

My roommates have been going to exercise every morning for about a month or so, and I've always balked at the idea of going. But lately, I've been wondering if maybe exercising would help the pain I've been in. So this morning without anyone asking or saying anything, I quietly got up, dressed, brushed my hair and teeth and as I put on my shoes, they asked me, "are you going exercising with us today?" They were so happy I was going! Actually one of my roommates has a chronic condition too and he inspired me. He gets up every day before going to work a full day, and exercises for about an hour-ish. And I thought, why am I not doing this too? 

I did what I could, 20 minutes on the exercise bike, and 10 minutes on the treadmill. I was exhausted at the end, and when we got back to the apartment and sat down for breakfast and coffee, (with sugar free creamer), I started yawning. First three yawns in a room. Then a few moments later, three more yawns. I think I probably yawned 4 sets of three. lol. like an exercise for my lungs. That's when my roommate reminded me of the pursed lip breathing, which I did. I got dizzy, the room spun a bit, my arms got heavy but when I got up to lay down, it all went away. 

I might go back tomorrow. I'm not sure. I hope so. Depends on how I wake up, if I'm still tired, if I'm in so much pain that I can't move around, then I won't go. I'm going to try to keep this up. 

The worst part about all this is, well, of course besides losing Tio Tony, is that the cravings for Coke are so strong it's crazy!!! It's like a cigarette or something... yuck. I might never have started drinking Coke had I known it would be this bad... We started young, with R.C. Cola. anyone remember R.C.? 

Rest in Peace Tio Tony!

I Can

I was in a focus group yesterday for rare diseases and although I can't say what was said, it was a good group, and hopefully will lead to some really good findings for us!

However, that's not what I wanted to talk about. After I left the focus group, I jumped on the Metro Train and headed to Union Station for a bite to eat. There's this really nice food court that on any ordinary day, would be almost empty at 2 in the afternoon, but was absolutely crowded where you could only inch your way around. There was a bunch of clergy with pockets of people and signs being carried around. That's when it hit me! March For Life had just ended and people were getting food before heading home to their home churches for prayer. They had all met up at the Basilica of the National Shrine of the Immaculate Conception, beautiful gorgeous church I love to go to every so often for a sort of refreshing of my soul. I love the sacred art and was able to go to Mass the other day.

So I inched my way around the enormous food court (I think it's the entire length of Union Station in the basement of the train station) and found a place to eat. I thought I'd never find a table but was able to find one with a perfect view of the beautiful stair case, 4 floors and winding around, it's almost majestic!

As I ate, I watched people going up and down those stairs with a bit of jealousy, alright, more than just a bit. Some were walking, some were even running, everyone hurriedly going to their train or bus trying to make it to their next destination .

But all I felt while I watched them go about their day, was envy.

I was going up an escalator to the Metro Train and I heard a train coming. I started walking up the escalator, maybe 5 or 6 steps, but by the time I sat down, I was so out of breath, and my heart was beating so fast, it took several moments to quiet it down.

I guess, what I'm' trying to say is, people who are healthy, if you can walk and talk, if you can eat and breathe, if you can run up a flight of stairs, be thankful. Be thankful that you better off than so many of us who can't.

I count myself as one of those that can. I can walk without oxygen. I can eat AND breathe, (something I couldn't do at my sickest), if not for my back pain, I could work. I can talk on the phone without being short of breath. I can do so much! I can walk on a flat surface without being short of breath, any kind of incline, and forget about it. But I CAN. and that to me, is pretty phenomenal!


Should I be envious of those walking or running up and down those stairs? probably not. What I need is to be proud of what I CAN do.

Stupid dreams

Why are my dreams so frikin strange??

 I had a dream, last night, that a well loved PH specialist was trying to kill me, my daughter, and Salma Hayek, who was a PH'er in my dream. He supposedly had a gun, and we kept running from apartment to apartment until we found a way to hide in a bathroom, except my daughter was being so loud, nearly hyperventilating, that he found us, AND the bathroom door was see through no less. ugh! AND THEN, while waving the gun around, he asks us to go to the corner of such and such and such and such and pick up a pamphlet on PH!!!

While hiding out in the bathroom, I called 9-1-1 with my cell phone but since I didn't know what the apartment number was, I couldn't tell them where we were hiding out. We leave the apartment in search is the pamphlet and there are 4 elevators, but only one of them works. So nearly 100 people cram into this elevator, which for some reason, opens up on both sides. The entire time I'm in the elevator though, I have the doctor's gun in my back, and my daughter and Salma Hayek have been separated by the crowd.

They get out of the elevator from the rear and me from the front, which meant I had to walk all the way around the building to find everyone. My daughter's fiance finds me first and asks what was going on, but since I still had the doc's gun in my back, I couldn't tell him. I tried telling him in Spanish, but the words came out all jumbled up.
Walking around the building I start yelling my daughter's name, I walk up to a fence, and while yelling out her name, a woman turns around and tells me to shut up, and it just so happens to be me! that's when I wake up.


For crying out loud!