uneventful days

so there have been a lot of uneventful days lately. a grocery store run is the most excitment i get in a day, unless a friend comes over and takes me out to say pechanga. every three months, i have a support group that i run. so is this all there is to me?  i wonder.

a bit better today

depression not so bad today. things not so bleak.

crying?

I thought crying was supposed to be good for the soul. I thought you were supposed to feel better after a good cry. these are things that i have been told, all of which don't hold water, at least not for me.

Two days ago, Carlena was here arguing and fighting, blowing her sax (which she loves!!!!!) while I tried to rest. We asked her to stop, we asked her to calm down and if she wanted to play her sax to please go to her room. Well, she wouldn't. mom told me she couldn't handle another day with her, she was out of control, and I had to send her to her fathers. I bought the ticket to send her back and these past two days has been a world wind of emotions! Anger, blame, and finally sobbing as if, God forbid, she had died, or was going to.

This morning at 6 am, we left mom's and headed for the airport. I've been crying ever since. I miss my baby. I feel like i didn't do enough for her. i didn't do enough to get her help. i feel like i gave up on my daughter.

so i've cried and cried until it feels like i have no more tears left, and then a fresh lump forms in my throat and the tears flow. but my soul doesn't feel refreshed. it's not a relief. it just hurts like hell. and now, i feel like i'm going to throw up.

who knows how long i'm going to feel like this. i know i need to double up on my steroids because i do feel so bad, sick almost. my head hurts, my eyes are blood shot, my throat hurts. i just want to know, when is all this crying and pain supposed to go away?

CPAP how I hate you!

How do I hate you, let me count the ways:

Your mask leaves marks on my face
The straps pull my hair in the middle of the night and wake me up
I feel like I can't breath with you blowing all your air in my face
The air you blow chaps my lips
The noise you make keeps me up
With your tubing I trip in the middle of the night
I still snore even though I'm not supposed to when I use you

Oh CPAP how I hate you!

Birthdays

Like I do every year when one of my children has a birthday, I dig deep into my memories and replay the story of their birth. Lulu will be 15 on St. Valentine's Day!! Time to go back in time and relive the moments that brought my darling youngest daughter into this world. How I love that little girl and miss her so much! Lulu lives in Texas with her father and grandmother, and I miss her so much! I see her twice a year, one week during Christmas, and two weeks during summer.

Knowing that Luzy would be the last baby i'd ever have, I knew I wanted to really really enjoy the pregnancy, babyhood, and todlerhood. Of course it was difficult having two others that were being potty trained at the same time, and running around driving me nuts. lol.

Luzy was born in Vista California, in Tri City Hospital in the afternoon. she was a very healthy 6 lbs 1 oz baby who's apgar scores were high. Such a beautiful newborn, nurses were coming in to see the lovely child who's lungs were so strong. lol. Her delivery was uneventful, thank goodness!!! and we were all very happy to have her join the family, finally.

nasty fall!

I had a nasty fall today outside some business offices.... I don't know really how I feel, but i was arguing with my child when down i went! I was so embarrassed because I hadn't fallen like that in a long time. Now, my ankle is swollen and my knee is all torn up. I"m in a lot of pain but that's what I get I suppose. UGH

echocardiogram

this image is of my echo

So i had an echocardiogram done last week and my numbers are better than I thought they would be! When I was diagnosed, my pulmonary arterial pressures (PAPS) were at 115. I was stage 4 in the New York Heart Association's ranking, extreme shortness of breathe and palpitations at rest. I was basically on bed rest for many years. I was put on an invasive drug called Flolan which is infused by a catheter that is placed right at the tip of your heart. I was on Flolan for four years, and after four years, my PAPS were at 35, almost normal! The side effects of Flolan were so bad that i was weened off of it and put onto a newly approved drug called Tracleer. one pill twice a day, which did the same thing as Flolan did, it kept my pressures down and gave me a quality of life that i have been enjoying ever since.  I can walk for 15 minutes on a level surface, without inclines, without getting short of breath or palpitations. with inclines, i have to stop and rest for a few moments before continuing on.

So what were my PAPS this time? at the most, I'm at 45!! At the least, I'm at 40!! for me, that is very good since I have been symptomatic a lot lately. I've had to sleep on several pillows in order to not feel like I'm suffocating, I haven't been able to walk a lot without getting short of breath.

But what I'm suffering from the most right now is the stinking sciatica!!  A pain in my lower back that radiates down to my legs. NOW I feel disabled. NOW I feel like I'm sick. and it stinks!!!!!

Something I failed to say is that an echo is just an estimated guess at the PAPS. the only way to get a true reading is thru a Right Heart Catheterization, an invasive test where they insert a tube either thru the neck or thru the groin, into the right side of the heart, then the left. that's the only way to get a true measurement of your PAPS, and see how you really are doing.

dreans dreams dreams

Like I've sad before in a previous post, i've been having some crazy dreams! Last night had a plot and was stranger than strange. i was a scientist trying to get a grant for a piece of land to study some species of animal. while there, i found a  bug that i wasn't studying but that was new to me, and as a scientist, i thought i had known all the bugs around that piece of land.

these bugs were very pretty, the wings had feathers, red and blue and brilliant green. and the face was skeleton like, with bones protruding and teeth super sharp. it turned out these bugs were aliens from a far off planet and i was afraid someone else was going to get the grant to study these bugs instead of me and my bugs. so i started studying them and found them to stay close to a huge tree. when i tried to take a sample of the tree, i was attacked, of course being a dream, i wasn't harmed but i ran home, vowing never to return.

at home, we were taking down something from the attack when i found an enormous tree exactly like the one where the alien bugs called home. but this tree was bigger than anything i had ever seen, multiple stories tall, it went straight thru the house from top to bottom going thru the chimney.

i had one of the kids pour gasoline on the house and set it on fire because for some reason, i had an infant in my hands. i ran with the baby and lost my kids, so i ended up in a hospital,, trying to give the baby away to someone. they put me in the loony bin because of it and i was yelling, my kids! my kids!

that's when i woke up. strange huh? alien bugs and me with a baby? lol.

sick sick sick

SO i'm so sick and tomorrow is support group! :-( I don't know how I'm going to be able to go as sick as I am. ALl I'm doing is coughing and sneezing and blowing my frikin nose!
I have a doc appointment today in about an hour so I hope to get something to help me feel better before tomorrow. i hope i hope i hope! I'll be really sad if i can't go to support group

^i^

strange strange dreams

So I have been having some really strange dreams lately. The latest one was me and a group of people climbing a very tall, snowy mountain. we were getting ready with safety harnesses and all and someone runs up the mountain only to fall to their death. then I was in a coffee and it was my job to serve the people the food, the waitress. i couldn't find where any of the dishes were so i started serving people in cups... steaks and potatoes, in cups. lol. such odd dreams. then, after the coffee shop, my dream took me back to the mountain where the group of people and i were already climbing. we took a turn to  left and ended up in a gift shop. i was a cashier and needed to find bags for their purchases. the next room over were elevators leading up the mountain. I guess not even in my dreams can I climb a mountain. lol. once out of the elevators, i found a small grotto where the Virgin Mary was speaking to people. I was being pushed by the crowds trying to get to the Virgin Mother when I was pushed off the mountain. I didn't die and found myself flying back up to the top of the mountain.When i got there though, the Virgin was gone.

:-(

WOW!!!

Everything turned out better than could have been expected yesterday!!! More than better, it was wonderful! Thank God! I was so scared and worried about what would happen and it all turned out for the best! I'm so thrilled and thankful and and and... words can not convey how awesome things turned out and how grateful I am!!!

thank you so much for your prayers

so nervous!

I'm waiting for a call for to see in which direction some one's life will go and it's pretty scary on this end. please pray all goes well!

hard times

These are hard times for me. I have 2 things I'm dealing with besides myself. I can't share them here because they are way too personal. i barely got any sleep last night, tossing and turning all night long. i know those involved didn;t get any sleep either, at least on this end.

no matter where i go in my head, i always run into the same two situations and how am i supposed to deal with it? i know i haven't processed it in my head or i'd be a mess, worse than i am now. i haven't cried or shouted or anything. people think it's a game, or something said to get attention, others think it just didn't happen. but i know it did. i know it did.

anyways... i guess that's all i have to say.