Thursday, November 27, 2008

May all of you have a........

PhotobucketHope that everyone has a Happy Thanksgiving. Whatever you decide to eat or do. I hope from the bottom of my heart that everyone will enjoy this wonderful day. Please remember to give thanks for all the blessings that we have. And remember prayer and positive thoughts, for our buddy Mason. And all of those that are not doing to well!

I can't wait to start eating TURKEY! Yum, yummy, LOL




Wednesday, November 26, 2008

50 yrs old and Happy to be alive!

On Tuesday, November 25th I turned 50yrs old. Now when I was younger, I always thought that 30 was over the hill. I learned that it wasn't, then I dreaded turning 40yrs old. But I lived with it and I was worried about getting old. I always told my kids that I did not want to end up in a old peeps home. That they better not ever put me there.
Well then came PH and I honestly thought that I would not live to be 50yrs old. I thought that I was not going to make it through another year. But here I am 50 and still breathing, sometimes a lil hard to breathe, but I am here, happy and proud to be a 5oyr old.
Now one day in chat a phriend, Marcia was commenting about getting old, she recently had a B'day also. So I told her we are not getting old, just beautiful by the minute! So when ever you feel like you are getting old.... just think of what I told her, ok?
On Saturday, Nov, 22nd I had my B'day party. I had a magnificent time, it was just awesome. I did drink one margarita got a lil typsy and was about to pour me another one. But someone was taking pictures of me doing it, so I decided to just not drink it, LOL. Just in case Imelda wants to blackmail me with that pic, LOL. Imelda is another phriend.
We celebrated from Saturday until Tuesday. Here are the pics!

Photobucket My daughter Mercedes, my son Carlos in back of me, my son Jose, and Me.

Photobucket ME!!!, LOL

Photobucket Me again!!

Photobucket On bench, my sisters Maria and Martha, in back my sisters Peregrina and Irene, and on wheelie me. Taken at Olvera Street in Los Angeles, CA. A famous alley type place with all kinds of venders selling things made in Mexico and lots of Mexican Resturants. They also play live music in the Plazita, were you can sit and listen to the music or you can dance away!

Photobucket On bench, my niece Debbie, her mom Graciela, my sisters Maria and Martha. In back my brother Ramon, my brother Francisco, my sister Irene, her husband Carlos, my hubby Juan and then Me :) At Olvera Street

Photobucket This is a life size Nativity Scene, that is located in the Plazita at Olvera Street.

Photobucket This is for JenC, she asked me to get the name of a whole in the wall corner place. Famous for it's rolled Taquitos served with guacamole sauce. I knew I would forget the name of it. So I just too a pic! It's called Cielito Lindo! Also located in Olvera St.

Photobucket This is a bracelet that I made for myself on my brithday so that I could wear that day. It is red and gold crystals with gold rondelles.

Photobucket A friend of ours John, and my hubby Juan.

Photobucket A vase with beautiful carnations from my phriend Jen. She had them delivered. Thank-you sooooo much Jen :)

Photobucket Me agian holding the ballons that my sons drew for me :)

Ok, I think these are enough pictures, LOL. I have had I think the best birthday ever! Thanks to all my family, friends, phamily and phriends! I do not regret one bit being 5oyrs old and beautiful!

Hope you all have a wonderful Thanksgiving :) Don't eat to much! Yeah right!!


Saturday, November 22, 2008

My sons, the taggers!

My son Jose and my son Carlos, tagged one of the inside walls of my garage. They are so busted!
They told me they did it for me. This was done last night. Please be patient many too see.

The beginnng ...............












Photobucket To the end.

Don't you think my two handsome taggers did a GOOD job? I love them both! And so proud of them :)

Hope you have a wonderful weekend. Take care.


Wednesday, November 19, 2008

Just tyring to deal

We've been trying to get ready for my 50th B'day party. And my heart has been fluttering like heck. I think, no I know it is probably stress. I get very overwhelmed at this time of year, not just my birthday, but Thanksgiving and X-mas. They are so close together. I am crying for no reason at all. I am worried about this and that I am tired and sick. You name it I am it! I am very moody and bitchy. (Are we allowed to write that?) Oh, well..... I just did.

My husband has been so patient with me. ( I'm not). He is good to me. I appreciate him alot. Even though sometimes he justs ticks me off, men! Can't live with them, can't live without them. Anyway he has been outside since yesterday putting in wire for landscape lights. I mean I told him about 2 weeks ago that I wanted lights by the walkway because it is very dark and I didn't want to risk anyone (drunk) falling or the kids that tend to run around. Boy do they have energy. Do I mean the drunks or the kids have energy? I dunnoooo. Well he finally put some of the lights and he turned them on. They look nice right now, lets see when it gets dark. I am pretty sure they will look nice, after all his specialty is electrical work, even though he can build a house from bottom to top. He likes electrical work better and he is good at it. I am not bragging it is just the truth.

Crap, I am not surprised I am not flooded right now here in my PC room. I am typing away trying not to mispell. I tend to do that alot and I hate that darn backspace button. it takes up so much time. Anyway back to the flood I am just crying away for NO REASON AT ALL!
Ok....the party will come and go soon, and I will be ok? NOT! Thanksgiving is just next week and thennnnnnn X-mas next month! But like I said I get like this every year. But... this year seems to be worse. Maybe turning 50 is bothering me? I don't feel like it is. And I have never worried about getting older. But I do worry about getting older and being ill. I guess I should be thankful that I have lived one more year.
I have to go now and supervise outside. more see what's going on, LOL Hey I managed to get an LOL out. I guess that is a good sign right?
OK enough!
Thanks for reading and allowing me to vent :)

Tuesday, November 18, 2008

PH and PHriends

PhotobucketToday is the official day. November 18th, 2008 ~ Pulmonary Hypertension Awareness Day.
I hadn't really thought about what I was going to write about. I was not worried though, because I knew I would think of something. Well I've known for a few days what it is that I wanting so badly to write about. And today the official day would be just perfect.
I want to talk about PHriends. I think I have ALOT more phriends now then what I have ever had before. You see my phriends are very special to me. I have gotten really close to alot of them. Especially the ones from chat. I feel that we have gotten really close and I hope it stays that way. My phriends relate to me as I can relate to them, you see we have something in common and that is PH. I can cry and complain to them about my ups and downs dealing with PH and there is always an answer for me from one or all of them. We pray for each other, we give each other, LOVE, SUPPORT, and HOPE! We also have lots of laughs and good times in chat. We talk about food, liquor and ????.... Lemons!! LOL. Chat isn't just talking about PH, yes we do discuss it. And we all try to answer questions as good as possible ( im not a real good answerer) But I do try. We always welcome newbies and we bomb-bard them with all kinds of questions. We try to make them feel right at home.

Photobucket This is one of my special, special phriends. He is my buddy Mason! He is 20 yrs young. I met Mason a little over 2 years ago in the PH chat room. At that time Mason was living out here in Calif. a few miles from me. I remember he asked me in chat one evening if I was planning on going to the next PH Support Group Meeting in our area and I told him that I had been wanting to go, but had not made it. He told me that I should go, so...... in Oct. of 2006, I went to my first meeting and that's where I met Mason in person. I remember he was so shy. He had the cutest smile on his face. As soon as I saw him I knew it was him... He had not yet posted his pic on the message boards. So I had no idea what he looked like. But I knew. I remember I went up to him and I introduced myself to Mason, and also introduced my son Carlos. That was the beginning of a good phriendship. Mason had a Tx a little over 2 years ago. And right now my buddy is not doing well. He is in ICU at a local hospital here in Calif. He is intubated and sedated. We get updates on our buddy Mason, through another phriend Colleen. She is wonderful she is our hunter when someone is MIA. She will go out of her way and does even the imposible to try to find out how the rest of us are doing. TY Colleen for all that you do for us.
Everyone is worried about Mason right now, but everyone is showering him with positive good thoughts and prayers. This has been very hard on me and my other phriends.
I am asking in Mason's name to please, please take some time out and pray for him and if you don't pray that's ok, send him positive thoughts. I know that he will feel all our love and support, he will pull through. He is a FIGHTER!!
I pray that GOD will help Mason pull through. GOD has his reasons for doing what he does. But I have been begging GOD to please place his healing hands over Mason and help him!
Again, when you have a moment of time... it only takes a few seconds to ask our LORD to make Mason well.

Wednesday, November 12, 2008

PH and My Story

PhotobucketBack in 2003 I was having rapid heart beats and alot of SOB. I went to my PCP which then referred me to a Cardio, the whole works was done on me. I went back for results and she told me that the results of the echo showed that I might have Pulmonary Hypertension. She didn't explain to me what PH was so I said ok. She then referred me to a Pulmo Dr that supposively knew about PH. I went to my first appt and indeed he said the same thing. He was to order more tests. But at that time my PCP changed networks so I was no longer allowed to go see that pulmo. I still didn't know what PH was. I was still getting very SOB so I fought with my PCP's office to get a referral to someone that would take care of me. In the meantime I was RX inhalers for asthma, (which I never had). That stuff in the purple disc. (I forget the name)
I was rx something for my rapid heart beats and also lasix. My SOB continued I knew it was getting worse. I was sent to see another pulmo Dr and he told me that there was nothing wrong with me, that I just needed to go home and loose some weight. My PCP then refered me for Gastric Bypass Surgery. I went through all the classes and tests that they require. I had to be cleared by a Cardio Dr and a Pulmo Dr. The cardio Dr said that my echo showed something about my heart but still cleared me. The Pulmo Dr said I did have what looked like PH but he cleared me also. OK I was cleared and good to go..... The Gastric Bypass Surgery Dr called and said he wanted to see me. I went in and he told me that he could not risked doing the surgery on me. He said that the numbers on the echo were supposed to be at 25 and that mine where way over that. He told me... You really need to go see a Dr that can treat you for PH. I was uspet and was crying.
I went home and went online and looked up Pulmonary Hypertension. Oh my GOD. 3-5 years of LIFE LEFT! NO, this can not be true! Why, why I said? Sobbing like always I continued to look further into PH. Then I see.. Ïf you took Phen-Fen, you could have PH! I said what? What the heck is going on? Yeah, I was one of those that took Phen-fen and that's why I now have PH. Funny isn't it, Phen starts with Ph... I am still Phat and I now have PH!
I found PHA boards and checked out the Dr's and I found the wonderful Dr. Channick. He did my RHC and confirmed PH and started me on Tracleer. I started having problems with my Ins they refused to pay continued visits to see Dr. C. They sent me to another Dr that supposively new all about PH but she was not a PH Specialist. She never did anything for me. I was getting worse. I ended up changing Ins at work as soon as open enrollment came up and I went back to Dr. C.. It had been about a year already, he did another RHC, my numbers were down a little not much so he added Revatio. A another year and I was getting worse. He did another RHC and yeap my numbers were higher then the first RHC. He then put me on IV Remodulin. I am still here and I am feeling a whole lot better. I still am SOB, not as much as before, but Dr C tells me we still have room to increase. So at this point, side effects and all, LOL I am increasing.
I can't emphasize again how important it is that you get to a REAL PH Specialist and get treatment!
Sorryyyyyyyyyy so long and thanks for reading

Sunday, November 9, 2008

Vicente Fernandez Concert

PhotobucketOn Friday Nov. 07 my sister Martha and I went to a concert.
Photobucket These 2 pics were taken in the sitting area of the Gibson Ampitheather, right before the concert started.
Way long before I was even ill. I would tell my kids and my husband that before I passed I wanted to go see 3 of my favorite artist perform live. Vicente Fernandez is one of them. Now you really would have to be into latin music, especially rancheras and with mariachi. To understand what I am talking about. He is one of the most famous singers of ranchera music along with his mariachi. Well I fianlly got to go see him sing in person. It was chido=awesome, LOL. Both my sister Martha and I enjoyed it very much.
Satuarday Nov 8th was my husbands B'day, We didn't celebrate because we had a 16th b'day celebration for his neice that we were invited to. It was very nice. I drank a lil Margarita :) with lots of salt and lemon! It was yummy and I almost drank another one, but the first one had already gotten to me. So I had to let it pass :(
My husband and his brother both took turns dancing with his long lost half sister. My husband dances so funny, I was LMAO. It looked like he wanted to box! LOL We all had a good time. And before we left my brother in law request the mañanitas for my husbands b'day. Mañanitas is the mexican version of a Happy Birthday song. All in all it was fun!
PH and having fun... As along as you don't over do it ( ejemmm... sometimes we forget not to, though, LOL)
We can all have fun even if we have PH. We do have to limit ourselfs. But we all need to laugh and be happy and once in a BIG while we can actually forget about this terrible illness and have LOTS OF FUN!
Please do enjoy your Sunday :)


Thursday, November 6, 2008

PH and Specialist

PhotobucketThank-you Barbara for the ribbon, it's very nice!
In order to be treated accurately for PH you really do need to see a Pulmonary Hypertension Specialist. Pulmonary Dr's don't always know about PH and they do not know how to best treat you. I have been very lucky with my PH specialist. He is kind, he cares about his patients, he
knows what he is doing, and best of all he knows how to treat PH.
My PH Specialist is Dr. Channick, he is at UCSD and he is one of the BEST. In order for me to go see my PH Dr. my husband drives me 2 hours one-way. I DO NOT mind going that far because I know that I am in good hands. And I feel very comfortable with him. I can always ask him questions and he will answer them. My PH Dr. has never never told me that there is nothing else he can do for me. He is always reasurring me. Sandee his nurse always answers my calls or emails the same day when I have a problem. Or there is something going on! Even if I have to go to ER, I have my husband take me over to UCSD. At UCSD they know what they are dealing with when it comes to PH and they know how to best treat a patient. All the nurses know about PH and they know about the different meds for PH and they have been taught how to use the pumps. So we as PH patients at UCSD are in good hands.
Today I had an appt with my PH Specialist. All looks good. As always he addressed all my concerns. And answered all my questions. He did RX neourtin, for my feet pain he told me that foot pain is one of the side effects of Remodulin. He also asked about my leg cramps and he adjusted the Lasix for that. He had Sandee draw blood from my line and everything was good. He told me to go ahead and continue the increase of Remodulin for another month which is when I am supposed to go back and see him.
I urge everyone that has not already done so, to PLEASE PLEASE go see a true PH Specialist. ASAP.
It is very important that you do so, so that you can start feeling better. I am not sure yet how to post the website here for PHA.. but I will find out and post it next time.
Thanks for reading


Wednesday, November 5, 2008

Update ...On my daughters Birthday

We met at Photobucket. We didnt really have to wait that long. I forgot to take my darn camera! But my daughter saw one of her co-workers there and she took a pic of us. Hopefully she will send them to my daughter and my daughter send them to me.
Let me see, what did I have? Oh yeah..... I had shrimp, shrimp, shrimp and more.... shrimp, LOL.
It was a very nice dinner we chatted about dif things and we laughed, which was good! It was nice being there with them we really enjoyed ourselfs.
Everyone and their mother was there having a Birthday Celebration! LOL It was funny because the waitress/waiters were going around to almost every table with a piece of cake with a candle and singing Happy Birthday.
When it was my daughters time we all joined in and sang to her! They all had desert I ordered mine to go. Key Lime Pie :) Yummm can't wait to eat it!
We eneded leaving like a round 10:30 pm. My daughter told me again to call her if I needed help with anything here at my house and also for my b'day coming up. I am hopful that this time our relationship will last forever!
Thanks for reading have a great day!


Tuesday, November 4, 2008

Happy Birthday Mercedes!

Today is my daughter's Birthday. Yesterday evening I was an emotional wreck. I knew I had to decide whether to go with my stubborn brian or my soft heart. I decided to go with my heart. My husband was sitting with me at the table and I asked him if he would take me to Pomona to the Hospital where my daughter works. He asked me why? I told him tomorrow is her birthday and I want to take her some flowers. Well after him joking around with me (like always) he said yes. He then went into the living room to watch the news and I stayed at the table. I was working on a necklace for my sister.
My phone rings. I didn't recognize the number, but I answered it anyway. It was my daughter she said she called me to give me her new phone number. Oh my!! I tried very hard to hold back the tears, of course I couldn't. She tells me don't cry mom. She asked me if I was going to be here at my house on Saturday because she wanted to come over and visit. I told her I wasn't sure what time because I had a concert on Friday. She said ok let me know, mom. I said it ok. We said out goodbyes and hung up. My husband asked me who it was and I told him. And he asked me do you feel better and happy now? I had a grin and said yes :).
So today we went for a late breakfast and he took me to her work and I took her some flowers, a card and a bracelet that I had made for her awhile back. It was purple her favorite color. I called her when we got there and asked her if she could come down, that I was in the waiting area. She came down, she gave me a BIG HUG and a kiss. I wished her Happy Birthday and we talked for a while. She had to go back to work, but before she left asked me if we wanted to join them for dinner at Red Lobster. I told her that we had a few errands to run and that if we got back in time we would go. We are back! So it looks like we are having dinner at Red Lobster :)
I am so happy that she called me and that we are talking. Thanks friends for all your support and good advice :)

Photobucket BTW, I voted early this am!

Thanks for reading


Monday, November 3, 2008

PH and Driving

I haven't driven much since I have been on my wheelchair. If I do go somewhere I need to have someone put up my wheelie and someone to get it down for me once I'm at my destination. So if I have no one I don't drive anywhere.
Well, today I had an appt. to go get my license renewed. I was just going to go get fingerprinted and have an eye test. YIKES! I was so scared that I wasn't going to pass my eye test. I know I need glasses. But my COBRA Ins is messed up right now so I have no dental and vision.
So there I went to my appt. My husband took me. I almost didn't pass it. My right eye doesn't see very well and the letters where blurry. I DMV guy asked me if I was having trouble with my right eye and I answered a little bit. He asked me to go around the corner to this eye machine and he had me read the letters. At one point I had to squint in order to see the letters but... I passed it!
Now what is the point or big deal of having a driver's license if I do not drive? Well... you see I feel a little bit less disabled if I do have one. And I feel that PH has not completely won! I hope that some day I will be able to drive again like I used to. I hope that some day I will not have to count on anyone for help and I hope that day will come soon. PH will not take certain things away from me.
That's why my license is important to me :)
Have a great day

Sunday, November 2, 2008

November is PH Awarness Month


I am going to try to post at least once a week on Pulomnary Hypertension. Today though I thought I would start with posting a Poem that I wrote a few years back. When I was recently DX with Pulmonary Hypertension. I never did write a title for it. Here it is.... Kinda sad, so I apologize in advance.

You came into our lives when we least expected it.
Because of you we are weak, unable to speak.
You are such a threat.
Our hearts throb and we even sigh!
But... it's not because we love you.
We are just trying to catch up to our breath.
We think of you night and day.
We wish you would go away!
We're stuck with you no matter what.
If you only knew the pain you have brought,
You are not innocent or pure.
Right now there is no cure....
But we will not give up hope you see,
One day a cure will come.
Just as easy as you came into our lives,
you will always come.
But you will not stay.
And we all hope and pray for that day!
"To all of us who are dealing with this terrible disease"
Catalina Lomeli
July 8, 2006

Saturday, November 1, 2008

I really do

Hi there phriends. Some of you know a little, about the situation with my daughter. Not a good relationship if you can call what we have a relationship. So I need some advice from anyone that reads my blog.
Her Birthday is coming up in a few days. I don't know what to do. Do I call her, email her (at work, of course I have no other number for her or email addy) to wish her a Happy Birthday? Do I send her flowers to work? Or just let it be?
I don't want to get emotiontal, which I know I will. So im stuck on what to do. Please be honest and tell me what would you all do if you were in my shoes? Don't be shy about what you have to say. I know that it will be my decision at the end. But... I really do need your input.
Thanks so much for reading