Christmastime is here!!!!!

Oh man, I have always always loved Christmastime! this year, funds are really really tight, so I've been crafting like crazy! here are some things I've crafted so far...

made these for  a fundraiser.. 

probably going to sell these starting at the beginning of the year

probably going to sell these starting at the beginning of the year

not sure if i'm giving this to anyone.
i have a lot of work to do on it still to make it neat and usable

this is for me :-)

I made a bunch of these for my family back home in Cali 

this little ribbon tree i made for my grand baby Ellie

does this even look like a christmas tree?

these have my grand's thumb print on them.. these also went to cali

Awareness Month 2013

The past November (a few days ago) we had our annual Awareness Month! Awareness Month is always very fun for me because i love love love raising awareness for pulmonary hypertension! I went the extra mile this awareness month by having TWO fundraisers!
The first one was a month long. Race Of Our Lives is a team of women, Team PHenomenal Hope, who are doing  the Race Across America. Patients across the country, me included, are doing Unity Races, walks or biking or whatever, to help raise money and awareness. 
My Unity Walk was called 30 Miles in 30 Days. 

well, I didn't make the 30 miles in the time I thought I was going to, but I'm continuing to walk throughout out December.  Walking can be difficult for someone with Pulmonary Hypertension since we get short of breath, and tired, and and and and...  so quickly. so after walking a couple of miles, i'm out of energy for the rest of the day, sometimes next day and even the day after that. so I fell behind, even walking 2 miles sometimes 2.5 miles. In total, in November, i walked 15 miles. and of course, I have my granddaughter that I look after while her parents are at work.  

So I'm continuing to walk thru December and am already at just at 20 mile mark! :-D I'm pretty proud of that!  Check out my first giving page and watch a video that shows just how difficult it is for me to walk... 

The second fundraiser I did last month was at a place where we decorated pottery. It was such fun! I have no idea how much we raised, but thru the generous donations from a patient in Northern Virginia, and some rings I made, we had items to raffle off! such fun! The place was packed for the entire time we were there. We had cake that was donated to us from the local Giant grocery store, and the PHA Central Fund donated drinks and decorations. 

We all had a blast! 

Another thing that i did this awareness month, which I do all throughout  the year, was make PH awareness images. I am so glad so many people liked the images I made this year and shared them throughout facebook, pinterest and instagram! 

just a few images I made for awareness month

Feeling Very Unaccomplished .....

I met an old highschool friend for lunch one afternoon in Cerritos, and we got to talking about other friends we went to school with. someone's a professor at UCLA, someone teaches in a tech school, someone else started their own business, and on and on and on. and all I could say was, I was a high wife. raised three kids and now I'm a child care provider for my grand baby. man, do I feel unaccomplished! really.  i do. :(

i'm back to trying to do something crafty, and while in Cali, my sis and I went to a hobby lobby - LOVE THAT PLACE!!! would be better if they weren't so frikin expensive. and I made my grand daughter several hair ribbons with a sweet minnie mouse ribbon i bought her there.. on 50% off sale... but you know, as "crafty" as I think I am, because I know I'm not really, ok ok... as crafty as I pretend to be. lol...... that's nothing. these people... these old friends of mine..... they are molding and changing young minds.. they are really out there changing the world! a housewife? ya that's an important thing to do... raising kids.. of course! i wouldn't have had it any other way... i don' want to play the what ifs and the if onlys..... but if only i had gone to college. what if i had applied myself and truly studied? i wouldn't be a cashier at a department store for what feels like the rest of my life. don't get me wrong. i enjoy working with people. i really do. but how is that going to make the world a better place?

I guess I'm taking stock of what I have done during the past forty some odd years, and I'm not pleased. Married right out of high school. started a family three years later. got sick during that time, laid in bed sick for four years.... was married for twenty years... Then finally, finally, started living after a divorce. I lost myself during those two decades. I mean literally. I had no idea who I was anymore. I was so engrossed and focused on raising my family, I lost my identity. Who was I? What did I like? What did i believe? slowly and little by little, I found myself again. I saw that I didn't like who I had become during those twenty years, and I needed to change that. I'm finding flaws in myself, my complaining, dwelling on the past, that kind of thing. I'm also quick to anger if provoked. so I have to work on that.

But of course, my  married life had an effect on me. i think of it often. what if I had tried harder? what if I had done better? what if I had never gotten Pulmonary Hypertension? would I ever have woken up from my dream like state? would I ever have stepped off my boring life into a life that I'm now happy to be living? However, I can see myself falling into complacency again... staying indoors for weeks at a time. and that too i have to change. I tend to dwell too much inside myself.

it's after 6 a.m. and I've been up for a while now. I think I'm still on Pacific time because I'm exhausted and would very much like to go back to sleep. But I know if I don't get this out of me, I won't be able to sleep,. not peacefully anyways. I tend to wake up at all hours, or not be able to go to sleep to begin with, if there is something brewing inside of me that needs to be released.

I'm not one to talk on the phone. too much drama. i have friends who only want to talk about themselves and i'm dying to say, listen to me... but half the time i'm complaining...alright! three quarters of the time I'm complaining! :( I know it's the truth. and I do need to work on it. But I also feel like I need to be heard. most of the time though, whether or not I'm saying things out loud, it feels like I'm not being heard... people take out their cell phones. play on facebook, twitter, instagram, whatever, and nearly completely ignore what you are saying. or they are formulating a response in their heads and miss completely the point I was trying to make. I'm guilty of that at times. another thing I need to work at. If I'm speaking to someone and  I'm giving them only partial attention, my mind wonders. So I have to close the laptop, put away the phone, stop making mental lists  of what we need or what i need to do, and give them 100%. It's a hard thing to do. especially on the phone, when you have people behind you yelling, or asking you questions, or whatever. so i'm not a phone person anymore.  I just lost track of what I was saying. and this is more of a book than a post, so I'm going to log off. Thank you thank you thank you for listening to me (figuratively) and if you understand what I'm talking about, if you feel a tiny bit of what I'm saying applies to you, let me know.  however you feel is appropriate. let me know. Because I want to know that I'm not the only person feeling so unaccomplished!

I guess changing the world begins at home. that is going to be a huge task! lol I'm going to lay back down again and hope to sleep a little better now. I know this isn't everything that is brewing up inside of me... but I have to process things as they come. once again, thank you for reading this and listening to my rantings! HUGS!!!

Long Term Survivor

In a little over a week, I will be celebrating my 15 years since diagnosis with Pulmonary Hypertension. That makes me a long term survivor of this disease. I often think, Why me? but not what you think. Not why did I get this disease? or Why am I the one to be suffering? Honestly,  I would much rather it be me suffering than my children, my mother, my siblings or God forbid, my grand daughter!
No my Why Me's are, Why am I still here after 15 years when so many of my friends with this horrible disease have died? Why have I been the "Lucky" one?

Keep in mind, that I don't believe in luck. I don't believe things happen by chance. Everything is preordained. God knows exactly what will happen. God knows exactly what I will choose and what I will do with my free will. so there is no luck, in my mind. I also don't believe in Karma, or anything like that. so why am I one of those who have survived when so many others have died?

My sister Susan died of cancer back in '06. that I did question God about. I had NO DOUBT in the world that Susan would survive the cancer. I believed that I had received my miracle, and that she would too, being how she was so much better of a person, so much more loving and caring and giving of herself. everyone she met loved her. everyone she touched was moved by her! :( so why Susan and not me? why was I still here and she died, not knowing her children, not watching them grow and mature into beautiful young adults? and never to know any of her grandchildren?

And the babies who are born with Pulmonary Hypertension? they suffer, and die so very very young. so frikin heart breaking!!!!! We NEED a cure for Pulmonary Hypertension.

and so the reason for my post today is to ask, to beg and plead, that you donate what you can, to the Pulmonary Hypertension Association, to help us find the cure! for those babies, for the families of those that have passed on. for their sufferings. please. Donate what you can. and share this blog, to help us find the cure!!!!!

PLEASE Donate to the
Pulmonary Hypertension Association!

Rest in Peace

When a friend (PHriend) passes away, I don't know what to feel. I feel so bad for their family, friends and loved ones, for all of us who loved them so much!! I feel glad that they are no longer suffering with this horrible disease, pulmonary hypertension. but then, i always seem to get selfish and wonder when it will be my turn and why i am still here after so long! next month will be 15 years since diagnosis and i'm still here. i've watched my children grow into mature beautiful women. I get to play and take care of my grand baby almost every single day! so what is it about me that I am still here and they are gone? I don't get it. Rest in Peace to all my phriends who i have loved so very much! We may have had Pulmonary Hypertension in common, but our friendship went deeper than just our illness. Rest in peace.

pain and exhaustion

So last time I posted that I was having a horrible day with pain and exhaustion on my regular Facebook page, someone my mother that I was having a horrible day. and my mom started worrying like crazy and called and called. of course, being in the hospital with my friend having chemo, I couldn't answer the phone even if I DID hear it ringing. :( the next day, we were back in the hospital for her booster shot, i don't understand it, but she gets chemo on thursday and shot on friday, and my mom called. i couldn't talk because the the day of chemo I drive us home and the next day I drive to and from the hospital. Anyways.. she was worried and I told her it was just tiredness and back pain. yes I lied. i hate fibbing to my mother, but i can't have her freaking out all the time, you know?  i think i just figured out my next qotd for monday..  lol.

soooooo  yesterday, after getting back from the hospital, (i still have my friend's car since she can't drive, she lets me keep it until thursday usually, so she can go to work on friday), we drove to pick up Jorge from work. I got this cool piece of cheap ass wood from the home depot he works at, and put it ontop of two of those plastic 3 drawer storage thingies to make a craft desk!! i'm so pleased with how it turned out. anyways, afterwards, it was still raining and we were going to take Ellie to the park or museum. Jorge was tired and hungry, so we went and got stuff to make sandwiches and sat under a sheltered picnic area to eat. Ellie was crying about wanting to go to play, so we walked over and she played for probably about 2 hours.  :-) I had fun too!! I played on the swings for a while, felt like i was flying, lol. (they should have swings in front of the ocean so that you can really feeling like you are flying! how fun would that be?????)  and i even got onto this little apparatus thingie that spun around and around. of course Drea spun that thing with me on it for ever and I was dizzy like crazy... but how fun!!! :D :D :D after playing in the park, we went to a beautiful garden area. it was very hilly and we walked for probably about 1/2 hour.  we get home probably about 7 or so, and I told the kids on the drive back, if they wanted to, they could go out dancing or whatever... they were excited about it and agreed that they would want to go. they ended up going but there was drama in between the time that i said they could go and the time they actually left.  as soon as I sat down, i felt my body start to crash. i don't know another word to use. but it's that feeling you get when you just can't do anything more. and the pain starts to settle in your bones. the walking and playing and drama and sitting in chairs all day at the hospital, took it's toll and i started feeling it ALL, all at once. I layed in bed after organizing my craft table, put on my headphones and started hearing crying. Ellie had woken up and her bedroom door was closed so I couldn't hear her and she couldn't see any light and she couldn't leave her room to come find me since I couldn't hear her. :( I ran over and held her while she literally sobbed :( :( :( After a few minutes, I got a fresh bottle for her and we walked into my room. she didn't want to go back to sleep in her bed because Drea wasn't there. she climbed into my bed and closed her eyes. after a few minutes, i put on my cpap and the wind hit her in the face. she opened her eyes and giggled and i shushed her and said "night night". she rolled over and placed a foot on my leg and her arm on my belly. such a sweet and tender moment! :D When Drea got back home, I heard the door open and I said Ellie? she said something I didn't understand, but I knew it was her, so I fell back to sleep. Drea woke me with wild eyes and said, Where's Ellie? i looked on my bed and didn't find her on the bed, she had rolled off the bed and was laying on the floor curled up in her blanket with her mickey mouse. i didn't know why drea was so freaked out, until she said, she had searched for Ellie everywhere and couldn't find. her.

I forgot to say that on Thursday, I started feeling really really bad. I got short of breath and dizzy after yawning. scared the crap out of me. and then in the afternoon, i went to get lunch and after just a few steps, i got very short of breath. i kept going because I don't stop when I get short of breath, I'll stop when I get palpitations, but not just SOB. but when I finally got back to my waiting friend in the hospital, I was so ill, I couldn't do anything. I sat and ate and felt a tiny bit better. I started getting tingling on my hands and feet and then even on my face. and under the tingling, there was this horrible pain. like the one i'm feeling right now because my arms are up while i type. I called my doc and left a voice mail. they called me back later in the evening and said the doc would get back in touch with me. it was strange because the bag that I held the food in, i couldn't open my fingers all the way. i asked my friend to help push them open and she said she felt stiffness in the joints. I did end up feeling better, not completely, but like 80%, and was able to drive us home.


all of this is to say that when I woke up this morning, i was in so much pain! and exhaustion! I just woke up from probably a 3 hour nap or so and I can still go back to sleep! i'm going to... my stomach is all upset and i feel like i'm going to hurl, but it's all something I can't post onto my FB wall since i don't want mom to get worried. :(

after I'm done with this, i'm going to put on my headphones, turn on netflix on my laptop and watch some grey's anatomy. :-)

Jorge, Drea and Ellie

Crafting

It's been hard for me to get out of the apartment lately... call it agoraphobia, call it fear of not having enough energy to make it home, call it whatever you want, but it's a real fear. It's hard to be indoors 24/7 like this and a person can only watch so much Hulu, Netflix and television. So, I have been crafting lately.

I have been using what I have on hand: an old shoe box lid, a pair of old jeans, a picture frame whose glass was broken, and lots and lots of foam! lol

I started out by making a hanger for my necklaces. Using a dowel, some recycled pieces of chain link, and something to hold it into the wall, i have my necklaces hanging up.. Then my earring holder. I painted and decorated an old picture frame and glued a piece of plastic canvas onto it. that hangs on my wall too :-)

My rings were a little bit trickier. I read somewhere that using felt rolled up, you can stick rings in between each piece. I had a piece of felt, a white one, left over from when I made Ellie her Halloween costume last year. Certain that it wasn't enough, I sat on the idea for a few months until I figured something else out. My granddaughter had a birthday party coming up so we had to go get paper products and the dollar tree is where we ended up. Walking the aisles, I found a bunch of crafting supplies and went crazy! Large sheets of foam, foam with adhesive on the back in shapes of animals, musical instruments, shapes and letters, were everywhere! I had such fun choosing what I wanted to get!

I used the foam sheets to make a quiet book for my grand baby, which I'm still working on, and she and I have been "crafting" together, decorating things with the foam stickers. When I saw I had left over foam, I thought, this would be perfect for my rings! all I have is costume jewelry, and I love bling, so I had to figure out a way to have my small dainty rings and my large oversized rings fit in the same holder. so I rolled up the foam, and using a hot glue gun, glued them together. For the larger rings, I left a gap in between to let them fit. I used an old pair of jeans to decorate a shoebox lid, and VOILA! I love it ! :D

Magnets I made for Ellie to play with 

my ring holder. 

An old mirror I found, painted it, decorated with
glass beads, tiny mirrors, & a purple flower

    

for great grandma

Ellie's quiet book, page 1

  

for the quiet book:
Cars, trucks, bus, boat, train

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!

i hate Sundays on Facebook. every other image is a Biblical quote, every other image is of Jesus with a football player, a young mother, a sick child. Seriously, if I wanted to read Biblical quotes, i'd open my Bible. If I wanted to see images of Christ, I'd go to a museum to see sacred art. 
Don't get me wrong. I love GOD! I love the Bible! I love Christ. I love sacred art! But it almost feels like people are trying to convert me, OR they are shoving their faith, their beliefs, down my throat. I'm sorry if this offends you. I didn't mean for it to. Just stating my feelings on the matter.Perhaps the reason why I feel this way is because my faith is so shaken. I still believe in God, in Jesus Christ, His only son, who sits at the right hand of God judging the living and the dead. I still believe in his virgin mother Mary, in all the angels and saints, and of course the Holy Spirit. The beautiful Trinity that watches over us, guides us to make the right choices. I know I have a Heavenly Father. 

I have always taken the Bible literally. Believed that the world was created and not some sort of "Big Bang". However, in that respect, I think that if God wanted the world to be made in such a way, of course it would have been so.  But now I wonder if we are supposed to take the Bible so literally, when even Christ spoke in parables  and stories to teach His disciples. I am pro life.  I am pro birth control, there's no way I would have chosen for my child to have a child at her young age, however, I couldn't see our lives without this precious baby!!! I am strongly for equality for all, for the LGBTQ community, for women all over the world, for every living creature!  

Next stop... The Future

It has always been a lot easier for me to not plan things out... 

See when I was diagnosed in 98, I knew my life was over. so, at that point, I stopped making plans. Things a month out were too far into the future for me to see because, well, let's face it, was I really going to be alive in a month to see it? honestly, this is how I thought for many many years. It's still pretty hard for me to think about the future, perhaps out of habit, perhaps out of fear, I don't know. 

I know 14 years have passed. That's a hell of a long time when you are dealing with chronic illness. 14 years of anguish, pain, fear and dread, love and happiness, depression, and every other emotion a person can have. Death in the family, of friends who were family to me, the birth of so many little ones I have grown to love more than I could ever imagine! 

Fourteen years since I was diagnosed, longer if you count the years I endured without knowing what was wrong with me. I'm sure I was sick for at least 2 years prior to being diagnosed with Pulmonary Hypertension. 

But to look into the future, no matter how far in, to plan anything more than a few weeks away, it's pretty scary for me. I wonder how many others out there with a chronic condition, who were told they wouldn't live past 2.8 years would feel about the future? 

And then in 2001, I was diagnosed again, with another chronic illness, Pan Hypo Pituitarism. Part of my pituitary gland is missing, Poof! Gone. I started taking steroids to keep my body going. problem is, the steroids that have kept me alive since then, are starting to wreak havoc on me. Osteoporosis, Amenorrhea, Diabetes, Other Adrenal Insufficiency, are all due to the steroids.    

So is it any wonder that I have a problem with planning, with even thinking about what life could be like? Because when I do, I always think, "If I'm still here." 

Anyways, that's just me. 

Luzy

I think I'm realizing why I've gotten so depressed these past few weeks... My youngest daughter Luzy's birthday is coming up next month. February 14th. I've been going to all the regular websites trying to find something for her that shows her 1. how much I love her 2. that I realize that she no longer is a baby :( she's turning 17 this year 3. How much I appreciate her. Thing is, I don't know my daughter anymore.

What does she like? What does she do? how does she spend her time? What music does she enjoy listening to? Luzy hasn't lived with me since '08. Before the divorce, she moved out, for supposed to have been, just a few days, to "visit" her grandmother. Didn't turn out that way. She has been there ever since.  Not a single person asked me how I felt about it. I never got the chance to fight for her. After the divorce, I moved away - across the country to Maryland. Since then, I've only been allowed to call her on the weekends because my phone calls apparently have upset her so much she can't study. I only see her twice a year, IF i can afford it.

So, now my beautiful young daughter is a young lady and I have no idea who she is, and honestly, it just breaks my heart.

I haven't seen her since last summer, for two weeks. Most Christmases, she comes out for a week... One year, she was only here for 4 days. But I try to make the most of her visits. It's just so hard. I miss her so much!!!

Sick and Tired

No really! I have been sick and tired. Not just literally sick & tired, but sick and tired of the depression. I'm trying to get myself better though.

For example:

A friend called me up and asked to hang out with her at a museum. I was very excited to go but when the day came, I really really didn't want to. I knew though that if I didn't, I'd regret it. I went and had a great time!!

Another friend's family was having a Kings Cake to celebrate 3 Kings Day. We were invited. I wasn't up to going. hadn't left the apartment in nearly a week, except to take out trash. Got up, showered and dressed, even put on jewelry AND makeup. actually had a great time!

Yesterday, my daughter called to see if I wanted to join her  and my grand daughter in a shopping trip. 30 minutes by bus each way.  I said was, I'm still sick, another time. and hung up. A few minutes later, I realized I could go and really enjoy her and my grand daughter's company. I called and asked when she was leaving, decided to nap before hand and woke up refreshed.

And now, this Saturday, I've been invited to go roaming around the National Harbor and then dinner with friends. I'm going to do all I can to go and have a good time.


As for sick, I woke up a few days ago with a scratchy throat and sniffles. It's turned into a dry cough which scratches my throat even more... Hopefully it won't turn into anything worse and it won't stick around very long.

Stay well!

2013

I wish you: 

Peace and Happiness, Love and Laughter, & family and friends to share it all with!But most of all, I wish for a cure for us all!!

Wishing you the best for the New Year! From my family to yours.