family reunion

We had a really nice family reunion at mom's house. all the siblings were there, except Susan of course, but not all the grand kids or spouses were there. We had a huge turkey plus an enormous roast, with stuffing, a 7 layer salad, veggies and at least 5 pies! there were many other side dishes for all of us, since we had 20 people here! We had a great time but I really did miss those that weren't here.

The last time we all got together like this was in 2006 for Susan's funeral. very sad time!
The newest Castro kid, 5 month old Cory, is such a good baby! That makes 15 grand kids for my mother!

from left to right: Ralph, Debs, me, Jenn, Mom, Peter, Lo

my doc appointment in Loma Linda

So yesterday I went to see Dr Brand at Loma Linda University Hospital. He's really nice and studied under some awesome PH Docs. When I got there, I did a six minute walk right away and did 567 meters, which is pretty awesome. I pushed myself towards the end but I didn't stop at all, not once. I'm pretty impressed with myself too. lol

I locked the keys in my mom's car and we had to call for road side service. Fortunately it was a quick fix and we were on our way. The rain and traffic was so bad it took like, it felt, twice as long to get back as it did to get there.  At least it was a simple drive, as far as the freeways that I had to take.

The university is huge and was easy to spot, plus, the International Heart Clinic is super close to the reception area, which made my day so much easier.

I do like Dr Brand and feel like I"m going to stick with the International Heart Clinic for my PH Specialists.

2010

The year 2010 was a good year all in all, for me. I had my ups and downs and so did my family. But we came out of 2010 I believe stronger and closer together and mother and daughters. as sisters, I don't think so, unfortunately, since they all live in three different states.

In 2010 I was able to see my depression almost completely go away, Thanks be to God! It took many years and many different medications, but I'm here,  mostly happy, mostly enjoying my life. I don't want to say completely because that would not be true. I do think that emotionally speaking, I'm the best I'm ever going to be. Once I get closer to God, who knows... the depression, sadness, may be completely lifted, that's up to God's will. not my own. I'd love to be depression free. who knows. it may happen one day, or maybe when I'm singing with the choirs of angels. who knows!

I started the year off on the east coast, enjoying snowmageddon. the brisk and cleanness of it all was so beautiful! until the cars came and dirtied it all up. but still it was beautiful while it lasted. The kids were all together in the beginning of the year, playing in the snow. actually having fun together! That was, for me, the most beautiful part of 2010! Seeing my kids playing and laughing was awesome!

I ended up my time on the east coast in a homeless shelter, which taught me so very very much! I no longer pass a homeless person without a smile or a thought. I no longer take for granted all the things I have been blessed with, a home, a car, food. True the home and car aren't mine. I don't feel like this is my home, of course it's not. it's my mom's. She tells me all the time this is my home and I need to think of it as if it is. I think that will come with time.
There is so much to be thankful for! The heater and the air conditioner, electricity and gas stoves. In the shelter, the temp that it was outside was the temp that it was inside. You always knew how to dress. And you could never cook for yourself. Churches, God bless them, would bring us food, breakfast lunch and dinner. And it was really good food. If I ever get the chance, I'm going to take food to a homeless shelter and feed them like I was fed too. It wasn't just churches that would bring food in, it was also individuals who had come with their churches before, and just wanted to help, communities would also volunteer. Once an entire block of women with their kids, cooked for us.

I was only there for 3 weeks, but I learned so much from the women that were there. One lady would tell me how nice I was, and I would say, I try. She said something that stuck with me.
She said, "We are not human trying, we are human beings. so stop trying and be." I just loved that!!!

In June, I traveled to California for the Pulmonary Hypertension Association's 9th International Conference in Garden Grove. I so enjoyed it and didn't want it to end! They only last a few days, less than a week, but they are so jam packed with information, fellowship, and love, that I felt I would burst with it all!

In October I moved to California. my daughter was already living with my mom, I had her stay here after conference so that she could begin the school year here instead of having to transfer during the school year.
My time in Cali hasn't been very good, I haven't made my time in Cali very pleasant. I've been lazy, I've been sad, well, read the last post where I talked about that. I'm hoping to make 2011 a better year here, hopefully I can find a job now that the recession is "Over". yea right.

there's more to say, but I'm going to end this here and right more later.

^i^

become another person

Do u remember that silly movie Master of Disguise with Dana Carvey some years ago? Well, if you didn't watch it, don't waste your time, if you did, sorry..... but Dana's character came from a long line of people who could disguise themselves and become other people than who they are.

Well, that's kinda what I want to do, become another person than who I am. I don't like how quickly I'm getting angry at the stupidest things. I don't like how lazy I'm getting in so many different ways. Basically, I want to change and become a better person. It's a long and hard road but I'm starting to pick up on where I left off in D.C. and work on myself. of course I have to be here for my kids. I have to be here for my mom. But I also have to be present for myself. SOOOOOO I took the first step on Friday and found a new counselor who seems like a nice guy and hopefully can help me reach my goals.

one foot in front of the other. here I go.

exhausted

I usually take a nap during the day, before carly gets home from school, and when I wake, I've got enough energy for the rest of the day. Today though, she didn't go to school becuase, well, let's just say, they didn't let her go. tomorrow either. so I wasn't able to nap. I've been exhausted since 4pm, but the day keeps going and going, and going. it's 8pm and I would really rather be asleep than wide awake...

When I first got here to Cali, I was sleeping at 8pm, and most days I'm still asleep by 8 or 9.... now I'm so tired, I feel like I should have been sleep since 6....

i am so exhausted!!!

the state of my depression

The state of my depression varies from day to day, as I'm pretty sure it does for most people. Some days I'll wake up feeling really good only to be having feelings of sadness and guilt and all those other feelings.

But lately, the guilt is kinda getting to me. I feel guilty for not appreciating the home my mother has given my daughter and me.

I used to be able to listen to whatever someone said to me and take it in, without responding. I never stood up for myself, never said anything. I internalized everything that was said and would take it to heart. Even if someone told me, you're a piece of shit, I would believe it because why would someone say such a hurtful thing if it wasn't true. Once, someone told me, I don't have a need for you. That hurt. I don't have a need for you.... wow. I thought to myself, so I'm not worthy of your friendship or anything else.

I do my best to love everyone, no matter what they have done in their past. I do my best to forgive as well, that one is much harder. But I also give people the benefit of the doubt, this one I do over and over , maybe to my own detriment. I do all of these things in hopes bring my self worth and esteem up just a tad. but not even. I think I do all of these things because it's in my nature to love people and want to forgive. So when she said, I don't have a need for you, that really was a low blow for me.I cried over that even. stupid huh?

Now that I'm feeling not so depressed anymore (really good English there. lol), I'm wanting to say, hey wait a minute, don't treat me like a child! I'm an adult and have been for a while now! Don't speak to me that way, who do you think you are? I'm not going to argue, except one time I called my sister something out of anger and frustration, and then we both burst out laughing! How could something like that come out of my mouth?!? lol .too funny.

Now though, I WANT TO ARGUE. I WANT TO STAND UP FOR MYSELF. and I feel guilty about that.
arggggg.... it's a never ending cycle that I really want to end. suggestions? comments? leave a message at the beep.

beeeeeep.

driving to norwalk, cerritos and the city of orange

so yesterday early my mom and i jumped in the car and drove down to Norwalk to get my birth certificate. I need it to get my CA driver's license. It took just a little while once we were in the right line. first, stop by the information desk, then at the line of computers to enter name, address and phone number. finally in a short line where we stood for less than i think fifteen minutes. once I got the birth certificate, we drove to my godmother's house to see her, my uncle and my nephew. we were there for a short while, maybe an hour, then drove to the city of orange so my mom could see an old friend.

the traffic from Temecula wasn't bad. we took the 15 to the 91 to the 5. but then on the way back, it was a bit hairy. not too bad as LA traffic goes. lol. but in total, we ended up taking more than 5 freeways, high ways whatever. lol.

it was nice to see everyone and to get my certificate.

I had to go to Norwalk, in L.A. county because I was born in L.A. my mom used to say the hospital where I was born was close to the freeway. My brothers would chime in, where most accidents happen!!! :-P

relationships

Relationships are hard enough, but add on top of that, a terminal incurable disease, and you've got a recipe for what could possibly be disaster!

I say possibly because I know people that have been together for years and years even with Pulmonary Arterial Hypertension, and have been able to some how make it.

but it seems to me that most people can't hack their partner, their loved one, with with terrible disease. The divorce rate is high among those who's spouse is ill, with whatever, even if it isn't as life threatening as Pulmonary Arterial Hypertension. I have some ideas why, for me, i think it was selfishness. my x spouse was selfish and wanted a "normal" life not filled with hospital stays and medications, and doctor's appointments. of course, that's not the only reason why we divorced. but i don't want to talk about my personal relationship or lack there of, with my x.

trying to date someone and me having PAH is a trying experience, when do I tell him I'm sick? when do I tell him I have an expiration date? will that be the deal breaker? for these reasons and more, I've not been on a date in a while. i did date for a bit in MD/DC but I doubt I will be here.

walking and walking

So my cholesterol is super high, I'm not going to tell you how high it is but lets just say it's super high. to combat it, I've stopped drinking sodas and am working hard to watch what I eat. I've also gone twice walking with my momma, it's fun and we get some quiet time together!
I'm looking forward to our walks too.

I hadn't walked since I left DC because, well, there are too many hills out here and my mom has a car. Also my back, with the Sciatica, hurt too much to do much standing, let alone walking. The first day was pretty rough for me. We walked to the park and then around it. We actually didn't walk too long because of my back, maybe fifteen minutes or so. anyways, the next day was better...

I'm hoping we can continue to walk because I know that's all the exercising I can do! bummer part though is, my almost 70 year old mom can walk faster than I can.

^i^

Christmas shopping?

This is going to be a really tight holiday season. not

sure what else to say. I'm making ornaments to give

to family but the kids, nieces and nephews, aren't

going to like them. they want toys, fun stuff. i bought

a tin of popcorn for $5 for my brother's family and

for my uncle. that's pretty much the extent of it. oh

yea. i bought a $5 shirt for my nephew. i made

jewelry for my girls, but i don't think it's going to be enough. i have some t shirts i got several months ago for

each... big whoop
why am i so frikin down? I don't want to say i'm depressed because I spent a nice day with mom and later carly at the mall. not that i spent anything.

QOTD

So I have been posting Questions of the Day almost every day on Facebook for many months. I get really excited to see what the responses are from those on FB that do reply. I wish more people would, since I have so many PHriends as friends on that social networking site.

The most popular QOTD's have got to be the Roll Call. Roll Call is when i ask people to share where they are, what their diagnosis (es) are, and what meds they take. I really enjoy seeing who answer these questions and what part of the country, or world, they live in.

So if you follow me on FB, please answer the QOTD so that others can see where you are and friend you as well. But if you don't follow me on FB, I'm at www.facebook.com/flippymom

with love

Alex ^i^

whatever

I don't know why I'm so freakin bored out of my mind these days, except that

1. I don't have  a car
2. I don't have a job
3. I don't have the desire to do anything

So I sit at the computer and play farmville or yoville, read about my friends going into transplant and worry about them, or sleep. none of these things are very productive and I have to ask myself, what am I doing with my life? All those years I fought to live, literally made my medicine from scratch, fought against infections, had to wear ice at my hip 24 hours a day, and now that I don't have any of those things and I'm free and untethered, what am I doing with my life? Recently I heard a song that had a few lines that stuck in my head, Am I living to die or dying to live? or the other way around. whatever.

but whatever shouldn't be enough. it never was. I'm not sure if I'm falling back into depression although it feels like it. Whatever's, are they enough for you? Or do you strive for more than Whatever's?

oh my aching back!!!

I have been getting really bad back aches for many weeks, almost 2 months now. I went to the doc in Maryland before I came to California and was told I have Sciatica, a nerve that is inflamed. The pain radiates from my lower back to my legs if I stand for even 5 minutes. It's very very uncomfortable and inconvenient!

Any little thing I try to do, from cooking to cleaning, to anything fun like walking, I start to be in pain after a few minutes. The doctor here gave me a pain killer that honestly doesn't even touch the pain.

We have been putting up the Christmas tree here and I have been putting up the decorations, since I can not stand for more than a few minutes, most of balls are lower on the tree since I'm sitting.

What a pain in the back!!!

1st ever South Riverside Support Group Meeting

Our Support Group Meeting went really well today! We had 6 people in total including me! We had a very nice Meet and Greet where each person got a while to share about their PH journey. We had a nice lunch of sandwhiches, veggies and dip, macaroni salad and different desert breads. Our next meeting will be held on January 21st and I can't wait!!!

Wrapping Christmas Gifts & Back Pain

So most of today was spent wrapping Christmas gifts. not that I bought any, but I'm wrapping them for my mom. I have some gifts to give but those were things I already had, milk glass, angels, etc. its been fun spending time with mom, and wrapping gifts with her like we used to when the kids were little.

I have had to take breaks every now and then because of my back. I have siatica, nerve pain in my back that radiates down to my legs. Really though, all I have to do is get off my back and I'll be ok... it's just getting off my back means either lay down or sit down. I thought for sure this siatica would be done by now and I'd be able to do all the things I used to do. Isn't it enough to have Pulmonary Hypertension, Pan hypopituitarism and all those other little things such as raynauds, gerd, ibs, etc? now i have back pain... yuck

I'm so mad at myself!

So I have found a new PH doc who requested my records from Dr Girgis at Hopkins and Dr Frost at Baylor. Before I left D.C. , I requested these records from Hopkins and I have them on hand. I went to make copies of these records not knowing how many sheets of papers there were or how long it would take... long story short, it took almost an hour, 128 pages and 12 dollars later, i was/am so mad at myself!!! I was going to take the records to my new doc and ask them to make copies but like an idiot, i went a head and did it myself.

I know that $12 isn't a lot of money but when you don't have a job, you still haven't received your disability check yet for the month, it's a LOT of money! so needless to say, I'm pissed at myself. at least I don't have to mail the documents... when I go to Lo's house on Tuesday, I'll drop them off it's on my way off the 91 freeway in Loma Linda. argggggggg

Long Time no Blog

Yes I know it's been a while since I posted anything on here, and I apologize about that. Blame it on the Pulmonary Hypertension. I forgot where this blog was and even how to get on, but when I finally figured it out, well... I'm glad I did.
So much has happened since I last posted.

I have moved from D.C. and am living in California with my mom and daughter. My oldest daughter decided to stay in D.C. and my youngest daughter is still in Texas with her father.

I'm looking forward to Thanksgiving, going to spend a few days in the O.C. with my sister Lo and her family. (Lo is a nickname). I'm hoping to spend time with a younger sister while there and my godmother too! I'm not sure who I can or can not see... We'll see.

So much has happened... and so much hasn't happened.
I'm no longer depressed, well, no longer as depressed as before, and I'm not allowing myself to wallow in my self pity. I do still have days of sadness but it doesn't last, thank God! and my good friend Rob comes down to the area (an hour and a half drive) to visit. We went to Oceanside for the day and had a great time! We went to the Mission down there and then to a movie. afterwards, we went to the beach to watch the sunset. It was so amazingly beautiful and reminded me of the good times I used to have with the X. good times that never lasted. oh well. it was beautiful and so nice to watch the sunset on the pacific!!! I enjoyed watching the surfers try to catch the waves as they tumbled overselves. It did get a bit chilly as the sunset and I was thankful I listened to my mother and brought a sweater.
I really hope to be able to go to the ocean again soon!! My favorite thing to do now, thanks to my bff F. is to let my feet sink into the sand and let the waves crash over me!! such an awesome feeling, feeling the strength of the ocean, the salt in the water, and coolness of the water, wash over my body! I do not like being knocked down. lol. owwwies! :-)

can you tell I LOVE LOVE LOVE the ocean! I'm at peace there, and peace is a hard thing for me to find.

One of my daughters is in crisis right now and I worry so much about her. Please pray for her!

The worst thing IMO

The worst thing about being sick isn't the medications streaming thru your veins, or the poking and prodding they do during exams or procedures. It's not being able to live your life the way ou want to. For me, that's the worst thing. Yes, I'm better off than I ever thought I would be, and really, on good days, I feel like I'm not even sick. But those good days do come to an end, eventually. For me, I mostly have good days, until I get so tired that i can't do anymore.

I get tired very quickly. I "crash" and immediately need to sleep, or sit down. Yesterday, I was attaching something fun to my desk top at work and had to be on my hands and knees. It was the middle of the day and I was doing well all morning. When I got up off the floor, I was so tired and out of breathe, it really is an awful feeling.

My sister told me recently that women with heart disease who do things where their bodies aren't fully extended, such as on your hands and knees, or bent over to sweep or mop, clean the tub or vacuum, are more likely to  have heart attacks. I don't know where she got her information, but now I'm not allowed to do any of those things. Don't get me wrong, I'm not a neat freak like she is. I'm not even CLOSE! :-) However, if I want to do something, gosh darn it! I need to be able to do, and not worry that my day will be shot because I'm too SOB.

Any kind of hill or stairs makes me SOB and makes my heart beat almost out of my chest.

Chest pains are scary. Are you having palpitations? GERD? or God forbid, a heart attack?

wow, I guess for me, there are a lot of bad things associated with having a chronic, incurable disease.

Easter and so on

OK so there has been a lot of drama and bull shit going on here. I can't go into details, but the cops were called and someone was taken away and is in the hospital.

Now I'm being asked if i want to go on a day trip to NY. I feel GUILTY about this person being taken away and having to stay in hospital for a while, even though it is the best possible thing for this person. But when they call, and cry on the phone, well, the guilt comes in full force. I'm already depressed and i don't feel like i deserve to go on a day trip, or any kind of trip while i know they are over there, suffering.

I know i was suffering while that person was here. I know that everyone around us was suffering while they were here. but i still feel like crap because they are gone. i feel like it's my fault.

am i to blame for this person having to be gone? no i know I'm not. but it still hurts

Kite Festival, Cherry Blossoms, and Smithsonium Museums

Today one of my kids and I went out into DC for the International Kite Festival and Cherry Blossoms kick off. It was a beautiful spring day in the district, and tons of people were out enjoying it, just like we were. We jumped on the metro soon after noon hit.From the Spring to China Town, onto the Yellow line, but really, we needed the orange line... that delayed us by 20 minutes or so. We walked slowly enjoying the day, as so many visitors rushed passed us. It felt almost as if we were walking in slow motion. When we rounded the corner to the National Mall, the throngs of people were like waves hitting the beach. National Epilepsy Walk was being held, The Kite Festival and the Cherry Blossoms were attracting more and more waves onto the sand. There really were so many people we were forced onto the street as the cars whizzed by us.

We walked past the Washington Monument and it seemed even more people were flying kites, picnicking, or just sunning themselves! The sky was littered with kites today as participants flew their home made or store bought kites.

It was such a beautiful day full of excitement! But it was a short day too. After a short stay in the Smithsonian Castle, we went thru the African Museum with their artifacts and beautiful and intriguing things, and we also went thru the Islamic exhibits. Believe it or not, there was an exhibit dedicated to the Nuns and Sisters who came to this country as nurses and teachers and architects! Such fascinating things there!!!

We exited through the back of the Castle and headed for the metro. When we got home, I slept for 3 hours before Carly woke me saying she was hungry.

Although this was a packed 3 hours today, I was loosing energy by the 2 hour and absolutely needing to rest for some time. I'm glad we went!! And like I told Carly, these museums are still going to be here! We can always return!!! And we will!!!

me myself and I

So I'm Flippymom.. aka Alex. I've got three teen aged daughters who, when they were really young, I was diagnosed with a terminal incurable condition. I was actually given 2 years and told to make memories for my kids to have of me.

So let me back track a couple of steps and let me tell you what my terminal incurable disease is. I have a rare, orphan, invisible disease called Pulmonary Arterial Hypertension. Women are the ones mostly affected, in their child bearing years. BINGO! that's me! Studies are showing that for every 5 women with Pulmonary Arterial Hypertension, there is 1 man. But, for me this is the saddest part, babies are being born with this horrible disease. The elderly are also getting. I guess it would be fair to say, anyone of any age, gender or ethnicity can get Pulmonary Arterial Hypertension.

There are some reasons why people get Pulmonary Arterial Hypertension (PH). Some get it secondary to other diseases such as lupus and scleroderma. others get it because of methamphetamine usage or even diet drug usage. and, wouldn't you know it, I fall into the category of not knowing why i got it... idiopathic, or of unknown causes.

When I was diagnosed in 1998 there was only 1 FDA approved drug for PH, Flolan. Flolan is a drug infused through IV. At the time, only Remodulin, which was still in clinical trials and called UT15 at the time, was the only drug for PH in clinical trials. Since I was so incredibly sick, going into a double blind study would not have been a good thing for. A double blind study just means that some people get actual drug while others get essentially a sugar pill, only Remodulin was given as a shot into the fatty areas of the body, much like a diabetic would get their medications.

So, Flolan it was! I was on Flolan for four years. There was a catheter in my chest 24 hours a day, with medication that I would have to make myself like some kind of freaking pharmacist, and then have to hook myself up to the medication that I carefully put into a cassette, making sure every last teeny tiny bubble was removed. Of course there were side effects, weight loss, diarrhea and nausea, jaw pain, leg pain, flushing of the face, etc.

Finally, after enduring four years of Flolan, I was well enough to be removed from Flolan and be put on a brand new FDA approved drug, which was just one tiny pill twice a day! No more mixing meds, no more line infections, no more side effect. It is a dream come true!

There are now I believe nine FDA approved drugs on the market for Pulmonary Arterial Hypertension. PH is no longer a death sentence as it was before, as long as a patient is on medications and treatment.

I lead 2 support groups in the D.C. area, am trying to get a pediatric support group up in the air, and am doing so well! Thanks be to God!! and my doctors, Dr Frost in Houston TX, and Dr Girgis in Baltimore MD at Hopkins.

I'm sure I will add more to this blog as I get going...

For the Cure!!
Alex ^i^