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.