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 ~