But You Don't Look Sick

I wish I looked as good as I feel. I get alot of...... wowww you look so good! If people only knew what we PHer's have to go through to make ourselfs look good. Most of the time my smiles are fake! Sometimes I hate taking pics, and whoever takes them always makes me smile. And sometimes I feel so terrible that I don't want to smile. My pics come out with a BIG smile on my face, therefore people assume that I feel GREAT! I have not felt GREAT in a very long time. I can say that sometimes I feel ok or maybe even good, but not GREAT! When you have PH there are alot of BAD days for us... more bad then good! We take one day at a time. That is the only way we can do this. PH is a disease that takes everything out of us. We need a cure. Fight for our cause! And don't assume that because we look good we feel good!
Thanks for reading :)

Cathy

November is PH Awareness Month

I cant say I will post everyday. November is PH Awareness Month. And I will write about how it affected my husband, children, grandchildren, brothers, sisters and ME. We need to spread the word out. Many patients are misdiagnosed each day. It is very frustrating when you are told by Dr's that there is nothing wrong with you! You know something is wrong, but they tell you different. And when you are finally told what you have, it feels like if something was just lifted off of you, like a BIG relief. Even though you are told that you have a LIFE threathing disease, you are glad that you finally know what you have!
It has been very hard on me and my family. So much confusion so many tears, to much acceptance, alot of pain. So many downfalls. But... I am glad that I know what I have. I know what I can expect. I know my limits, even though sometimes I am overhelmed. And sometimes, yes I over do it and pay for it the next day... but stubborness is a part of me that well.. will never go away.... Please speard the word about PH and lets hope a cure is found soon!

On another note I started a new PH med on Saturday. Its called Adcirca. I am having the usaual side effects that go with this med, but I am hopeful that it will work for me and help me feel better. I don't ask for alot better just a bit :) The elephant that decided to come visit me and sit its PHat arse on my chest has finally gone back where it belongs, and my SOB is getting better. I am also much better with my stress and my sadness, its getting better, still there but... thnx to my bff JenC. I have a better attitude and I am doing better, I dont know what I would of done without her. Thank-you so much JenC... you are the best friend anyone could ever ask for :) And thnx for not leaving me in my time of need... luv ya

Cathy

Regrets... Forgive and Forget

I know most of you have had regrets at one time or another. Ive had many some very painful ones. Sometimes in a rage, or anger or madness we say things that we dont really mean! But later its too late, even though I say I am sorry, its still there and will be for the rest of my life. I have regreted many things. Its hard for me to get over them.. yeah.. get over it, it's easier said then done, when it comes to me. When I say something or do something that I later regret I will apologize for it, once I realize the harm I have done. But I cant forget about it, not for awhile anyway. Now comes forgive and forget, yes I can always forgive but then I can't forget about it. I know I have to move on, but somethings what can be forgiven can not easily be forgotten. I have dealt with this for a very long timeand I am talkinga bout years and years. I have tried very hard to change this in me, but I guess the suffering just takes over and I can't. Back to regrets... One thing I know for sure is NOT regreting having my 3 kids. I love them sooo much that it hurts. I guess you have to be a mom to understand. I lost my parents at a young age and that hurt so much, that I cant imagine ever looseing one of my kids. And I can only imagine the pain and suffering a mother goes through if they ever loose a child, young or adult.

One good thing I do hve to say is that my only daughter has finally come around, and I hope its forever. She has been coming around for about 5 months now. And about 3 weeks ago she apologized to me for the way she treated me before and how she treated me as a teenager. She told me she was young and stupid and now she realizes what I went through and what it is to be going through that. It's kinda sad that she ahd to see for herself with her kids to come to me and apologize. But I'm happy that she finally did. I accepted her apology, ( and BTW I DID NOT TELL HER I TOLD YOU SO) I was just happy! She told me that she loved me and I told her I loved her also!

I've been still trying to deal with alot of caca in my life, PH and otherwise. Many mixed emotions and dissapointments. I have still been very sad and not thinking right. But someone has set me straight! And even though she did get me MAD!! And I don't agree with what she did. I am thankful that I have her in my life and I luv her! I guess we can agree to disagree??

Ok enough hope all is well with the rest of you!






Cathy

To vent or not to vent?

I havent blogged in awhile, I do get reminders to do so, but just dont seem to be in the mood or ble to get around to it. But ive been thinking this is the best way to get things off my chest, mind or whereever they may be lurking.

A few weeks back, maybe a month or so ago. I was in chat with some other PHriends, the same ones as usuall, we were all joking around and something was said to me that I did not appreciate. I was upset, I said nite and left chat. I ended up going to FT and when I arrived there were 3 of my Phriends waiting there for me. I was asked if I was ok, I said NO! they knew what was going on of course, because they were in chat when I left. Anyway I VENTED about what happened! Then word got out to the person that I was VENTING about. She mentioned to of my PHriends and said that I went talking to them about her. So this person accused me of talking about her behind her back. I tried to explian that I was asked if I was ok and I answered, never did it cross my mind that I was going to be acccused of talking behind this person's back. Well this person told me she felt sorry for me and that I was no longer her PHriend because she could no longer trust me.......
Ok, so then I went and accused a PHriend of going and blabbing about what I was VENTING about. And to make long story short. Now this PHriend wants nothing to do with me either. She was really upset about me accusing her, which I dont blame her. She said that what I wrote was lame and she also told me that she felt sorry for me and we could no longer be PHriends. I was accused onnce again of making her ill. The past was brought up, which I thought had been resolved. I did apologize to her, but that did not work. All this got out of hand, I feel I can no longer be the same person that I was. I hurt a few of my PHriends feelings, I got them involved in a BIG MESS. Which I never should of done. I have some other things going on right now, so this has not been easy for me. I am sad al the time, just balling at whatever. I am afraid of saying stupid things. Like this for example. Will someone misread or try to misread and take this all wrong? I think that maybe sometimes its better to keep things inside instead of VENTING, that way you will not be accused of otherwise......

Cathy

As I continue....

To grieve for my BEST Buddy in the whole wide world, Mason. I see myself afraid now, afraid of getting too close to some of my PHriends. I am seeing myself more meaner then ever. I am being more of a bitch with an attidtude. I mean, as far as Im concerned I've always been one. But I am more now. I am afraid of losing someone else to this DAMN HORRIBLE DISEASE!
I miss Mason so much, I think about him every single day. It's been 2 months since he passed and almost 2 months since he was layed to rest. But yet it seems like only yesterday he was online IM me or I him, and it seems like only yesterday he was with us all in PH Chat. Just being himself like always. I miss his make up stories that he would tell us :). I miss his smart ass remarks to most! I miss when he would leave without saying goodbye to us and the next day I would scould him :) In a nice way of course. He asked me one time what I was gonna give him if he said goodbye before he left? Somehow a cookie came out of that, so in order to get one he had to said goodbye before he left chat, LOL. And he made sure he asked for his cookie before he left.. hehehehe! I remember alot of his last words to us in chat... very sad. He knew he wasn't going to be with us for long. He knew his time was coming. And deep down inside I knew it also, I just didnt want to accept it. I prayed so much for him, I begged GOD to please not take him, I begged GOD to please pass jis healings hands over his body and make him well. And I begged GOD to take me instead! Maybe it wasnt enough?
I know that he is in heaven and that he is happy and not suffering, I know he is breathing easier and I know he is resting now. But.... I cant help it when I miss him so much! I just wish he would of had a lil more time. We were making plans about what we were gonna do when he got his second set of lungs. But, plans dont always come out the way you want them to.
Mason, buddy... I miss you :)
Together forever we shall be, never apart, maybe in distance, but not in heart!

Cathy

I failed.....

Carlos and I went to Mason's service on Saturday, June 27th, 2009. Marcia, Ellen and Mack where also there.

It was a nice service, there were many there at his service. The reception was very nice. They had collages of Mason with family, friends and PHamily also. Some of the pics where of when he was a baby and as he grew into a wonderful young man. They also had a video of him and they played some of his favorite songs. There was some drama at the reception but that is something that I feel I should not discuss. So I will leave that at that.

So you are probably asking why?? Well... the reason is that I failed all my PHamily and PHriends. I was supposed to go and represent them all and I didn't. I was supposed to let all his family and friends know how much we loved him and how much we cared for him and how he had become part of our daily life. I was supposed to speak on behalf of all of us... and I didn't. He meant so much to many of us and I did NOT have the BALLS to go up there and let everyone know... I was asked by Janet to speak at his service, she told me that Dale had agreed to it. And I did not do it!

I cant seem to let go of this... I know I should, Carlos tells me that the important thing is that Mason did know and that's all that counts. He is right but I cant let this go!

I ask you all to please forgive me for bieng the coward that I am.

Cathy

My Buddy Mason, has gone to heaven.

In 2006 I met Mason in PH chat one evening. I remember me saying that I was from Riatlo, Ca and Mason told me that he lived in San Bernardino, Ca. He asked me if I had ever gone to the local PH Support Group Meeting, I told him no. But that I had been wanting to go but never did make it. He told me that the next one would be in Oct, 2006 and said I should go. My son Carlos and I did go and that is where we met Mason for the first time. I remember he was so shy and I went up to him and introduced myself and Carlos. A very cute and handsome young guy! That was the beginging of a very wonderful relationship. We continued to go to the PH sg meetings and we chatted almost every night on the PHA chat. We was so smart, brave, strong and funny, He always made us laugh.......
He went through alot, he had a double Lung Tx in 2006 and he started rejecting, so he had to be relisted. We all prayed for him very hard and he jsut kept getting worse and worse. But... he would not let anyone of us know that. He didnt want to worry us.
On Sunday June 14th, we got a message that Mason had taken a turn for the worse. I called his mom and I asked her if I could go see him, she told me yes of course. My son Carlos drove me to Los Angeles, Ca about an hour drive. On the way over there I would just be asking myself, what I'm I gonna say to him? When we were going to his room, Mason's dad came around the corner, and told me you cant go in there right now, he just went into cardiac arrest. I said OH NO!! and I started crying. He said that there were about 10 people jumping on him, trying to bring him back. Within a few minutes his Dr came out and told his dad. We brought him back, but it doesn't look good. And we could not go in to see him at that moment. We went to the waiting room with his dad and about an 1/2 hour later his mom came in. She came right up to me and we hugged each other and cried. We talke for awhile, then his big sister came and more people were coming and I told Mason's mom that we should probably go, so that his family could go in and see him. She said NO!! you are his family. We stayed and about another 1/2 hour later his mom said she was going to go check if we could go in already, but she didnt come back, so his dad told me come on lets go see if you can go in now. They let us in ICU and Mason's mom and big sis where waiting in the hallway. Mason's Dr then came out and Mason's mom that he needed to talk to all his family. She then told the Dr that I was his aunt and asked of Carlos and I could go also. Dr said yes. He then took us all to a confernece room. And thats when he told us all that there was nothing that could be done for Mason. And that he would not last the night. We all broke down.
Mason's mom asked the Dr if we could go see him and he said yes. So she told me and Carlos to go in. I asked her are you sure? She said yes.
Carlos and I went in.... It was soooooooooooooo hard to see Mason the way he was and it broke my heart, but I knew then what I had to say. I drove up to him and got as close as I could. I held his hand and I said. Hey buddy its me Cathney (he would always call me that). I told him that his sc, xl, his grammie and all of his PHamily and PHriends, were sending lots of prayers. I told him we all love you very much. And I told him its gonna be ok buddy. I moved back because nurses came in and I was at end of his bed. I touched his leg and we went back to conference room. I told his mom and dad that we were gonna leave already. We gave each other a BIG hug and we left. We were almost home when I got a call from Imelda, she told me that, he had passed already, that she was not able to see him, she got there to late. I cried and cried and cried. A few minutes later Mason;s mom called me and told me he was passed at around 3:30pm I said OMG we went in to see him around 3:20pm.. She told me he passed right after I left his room......
It was very hard to see him the way he was, but.......... I will never, never regret going. I'm glad I did!
Here is a pic of Mason, Jen, Manny, Me and Imelda, one time that we had lunch together.

Cheers Buddy!!! You will always be in my heart. I miss you soooooo much. You are my special angel now. And one day we will see each other again.
I love you so much. Thnx for all the laughs and the great times we had at the SG meetings and when we got together for lunch. You are truly missed!

Cathy ~

Carlos' Graduation

Its been a while now since I posted. I knew what my next post would be. I just needed to get to it.

My son Carlos at the age of 17, graduated from high school on Tuesday May 19th 2009. It was a very stressful and emotional day, for me as well as for him. He really wanted to give up! And I told him NO, YOU WILL NOT GIVE UP! He needed to complete alot of credits, I mean it was like he was doing school and homework 24/7, I knew he could do it and I told him so. I know it was a very stressful time for him. But...... He did it and I am soooooo proud of him :)

Here are some pics :)


My baby :)
Carlos and his neighbor buddy Jose.
Carlos and Gloria (girlfriend)

Carlos so proud!
Carlos and Gloria.
His Pa, Carlos and Me.
Carlos and friends.
Carlos and me.
Happy tears :)
This tie is choking me!


His party on Saturday
Yum!

Cake anyone?


Family

Family again with me in the pic :)

Well I hope you all enjoy the pics!
Thanks for reading :)

Cathy

My trip to Houston

I was wasnt able to attend the PHA Conference, last year because I ended up in the hospital. I still had my airline ticket that I needed to use before it expiried. So after talking with the gals in chat and I do have to admit I was a bit mad at my hubs. I decided to go to Houston. Ity took me a while to decide what day, and also wait on Dr's and Acreedo letters. I fiannly made the reservation. OMG I could not beleive that I did it. I remember going into chat and the girls were all happpy cause I was going, but when I was in chat and everyone was talking about it. I would ask myself OMG what Im I doing?
I left on Wednesday, April 29th and came back May 5th. I still CAN NOT believe I did it! I am soooo scared of flying and this time I was for the first time going to fly alone. My husband took me to the airport, we said our good-byes and I went on my merry way. ( my hubs didnt believe I was actually going, and by myself). 30 minutes before I boarded, I took a pill that my PH Dr. Rx to me for nerves and nausea, it actually worked a lil. It was a 3 hour flight.
The plane finally landed at my destination, Houston, TX.
My friend Jen, with her hubby Manny, were already waiting there for me. Jen had told me were to go meet them. I think it was like a day before I left. They were there, right where she told me they would be. I was so afraid someone would forget about me, LOL. Man!!! it was soooo good to see Jen again :) and Manny also, but I was glad Jen was there! I was really nervous about meeting the rest of the gals! After Manny gathered up my luggage, ramp and all! We went on our way to his truck. I sorta showed him how to use the ramp and how to drive my wheelie(which by the way weighs a ton) up his truck! He had it done in no time and before you knew it he was an expert on doing it! I was very thristy and a lil hungry, so Manny took us to Sonic! Yummm the lemon slush was sooooo good! Nice and refreshing :)
We arrived at Jeannie's house, Edna and Marcia were already there waiting for us. I was still a bit nervous about meeting them, but it was GREAT!! Marcia and Edna came to me and gave me a BIG HUG. And welcomed me to Houston. I asked where is Jeannie? Edna tells me she's inside I said is she coming out? And Edna tells me, there she is! She came over to me and also gave me a BIG hug, she told me you made it! And told me it is so good to finally meet you! I think I was a more calm now, LOL.
We had dinner and talked, we laughed alot also. Marcia took Jen and me shopping, for food to cook and she also took us to Sam Moo, its an accessory store with lost of nice things! It was fun, thats were Jen and I found our tiara's!
We also went to a BBQ place and went to see the Beer Can House, it was neat! Thursday with Jen's and Marcia's help I cooked a mexican meal! Everyone loved the food, I was glad! Friday we went to a Mexican restuarant and had Margaritas :) Yum! we also ate, LOL the food was good!
Here are some of the pics that we took, enjoy!






Jen, Marcia and I stayed at Jeannie's house until Saturday. Marcia left in the AM after breakfast. And Manny picked Jen and me up at 12pm. I stayed at Jen's house until Tuesday. Jen , Manny and Kayla took me to Kemah (sp)? We had dinner there with Jen's sisters, BIL, nieces and nephew. The next day they took me to Galvaston Beach. I got to put my feet in the water! LOL I was like a lil girl, so excited about getting them wet! They took me to a souvenier place. I bought a few things to bring back home. After that we had lunch, it was yummy! We then headed back to Jen's house. Monday Jen and I sorted and divided beads that Jeannie gave us! There was alot of them. I also should her how to wire wrap earings. Jen made lasagna and she wouldnt let me help her. It was very good. So Tuesday we got up at 5am, got last things ready and they took me to the airport. I gave Jen a big hug and Manny also. I tried very hard to hold back my tears. I went off and I wanted to turn back and wave at them but I just couldnt, I didnt want them to see me crying.
I had sooooo much fun! I am so glad that I had the balls to do this! I will never forget how much fun we all had, how much we all laughed our asses off!!
I am sooo thankful for you gals! For allowing me to meet you all and be your friend! God Bless You Always.. Love, hugs y besos!!

Cathy

Looks like I'm going

To Houston that is. I finally made the reservation. OMG I can't believe I did it! Not only am I scared to fly, but... I will be flying ALONE!! Yikes!!
I will be staying in Texas for about a week. I am hoping we have lots of fun, whatever we do :)

I will be visting a few friends... Jen and Jeannie and we are hoping that Edna and Marcia and maybe another friend can join us! I have met Jen in person already, but I haven't met the others so that makes me kinda of nervous also. I will just be nervous for awhile though, then the real me will come out, LOL. I hope they can handle me and not through me out before its time for me to comeback, hehehehe. I know Jen will help me out :) Just don't give me cerveza and I will be ok. lol

I have to make a list of what I need to take.... meds, bipap, enough chones, just in case I lmao and I end up with a lil accident :) LOL, jk!

Sooooo this is my post for the today. I know not very long, but hey you are all lucky I posted. I've been thinking to much about other things, and blogging just wasnt in my thinking, and anyway I get headaches when I think :)

Well I hope you all have a wonderful day!

Cathy

Opps.... I did it again

A few weeks ago I was complaining about pain in my chest area where my hickman is in.

I posted on board. After reading and getting some pretty good advice. I emailed my PH Dr. and I explained to him what I had been doing days, prior to getting this pain. H emailed me back and said that it sounded like I had pulled a muscle. To give it a few days and if it didnt go away or got worse to let him know. Well the pain went away.
It came back yesterday, and I think I know why. Everytime when I over do it with my right arm ( thats the side where my hickman is) I get the same pain, especially after doing something really straingous(sp?). So I was thinking back what I did the last couple of days. I clobbered the bunny piñata :( I mean I was really going at it with that bat! Swinging and swinging at the piñata, until I destroyed it :(
So now I know that I can not over do it with my right arm. Sooooo..... what else is new? Why does PH have to be so complicated?

Sorry for the whine.

Hope you all have a wonderful day!

Cathy

Easter at Martha's House

Carlos and I spent our Easter Sunday at my sister Martha's house. My niece and her family, my nephew and his family and one of my brothers was there also. We had baked ham with all the works. It was a nice day, sunny not hot, so that made it even nicier to be outside. My great nieces and nephews were all having a great time! After we ate, the eggs were hidden in the yard. Here is a pic of one of my nephews finding a egg in one of the plants. I was right there by it so I was able to take a pic.. I did crop him out. I don't want to post pics of them on here since they are not my kids or grandkinds

My sister Martha brought out a piñata that she made! Yes, she made it. She is very talented! It is sooo cute! It was made from carboard boxes and tissue paper, very sturdy! Take a look at it, and please do, notice the BIG bunny ears. Poor bunny it's gonna get totaled in a few minutes And guess who got to do that? It was sooooo fun. Can you tell? Hummm I wonder who I was thinking about? Oh... BTW the all the kids got there turn also before me, of course:). Then after I destroyed bunny I got a GREAT idea!! I wanted a pic of me and guess with what?? The bunny ears!!
Everyone got a pic taken with the bunny ears, I only posted a few picsMy son Carlos

My sister Martha and my brother Francisco

Here's a pic of my brother Francisco, my sister Martha and Me :)
Last pic is of the delicious cupcakes that my sister made, Yummmmmmyyyyy
All in all we had a GREAT time.. I didn't get to see any of my grandkids, and I was dissapointed but I did enjoy myself and my sister's house... we all did! And I hope you all did also :)

Thanks for reading


Cathy