Alright Alright Already!!

She's back!! It took me a couple of weeks, some tears,a lot of praying, Manuel, Maggy, and Alison gently working it out with me...but the oxygen is back. I can hear them all let out a sigh of relief! My body needs it and is already feeling the benefits. I am VERY thankful for the awesome memories we made without it the past two or so months!! All the fun we had! Anyway, God used that time to bless me and to show me the pieces of me that I had let go. Pieces that were important to keep! So once again lesson learned and here's to breathing life!! (even if through a tube)

Sent via my iPhone ; )

Donate Life 5K

We had an awesome day at the Donate Life Run/Walk! There were so many people it was amazing! My poor man ran even though his foot was injured!! It benefited Analiese though because she beat him by 1:15 (which he had to buy her a banana split for). All the Daddy's ran with the older daughters and us mommy's and little kids walked. It was so cute to see the little kids running. My nephew Ryan was a crack up because he would just keep running and blow past everyone! Bella and Ryan ended up running the last mile with Jim and Delia. Yep, the whole mile!! I was pushed by Amy the whole time. Now, as much as that is such a sweet thing that a best friend just does don't think it was all sweet!! She almost spilled me onto the asphalt 3 times! It was HILARIOUS and I screamed so loud!! I don't often use the wheelchair and now I remember why. Between her and Manuel I always end up SCREAMING from a near spill. I would rather take my chances with walking! It does make it more fun though, especially when people give you that look like "Oh no! The poor handicapped girl almost fell out of her chair!". FUN TIMES!! I loved being out there with my family and my best friends! I am so proud of all the kids too. None of them complained!! I was also approached with an opportunity to speak on organ donation to the Spanish speaking community. Pretty neat!

Hospital Stay

I went in to see my transplant Dr's on Thursday. They told me to go in because I was having symptoms that were scarring them. When I got there I was having extreme difficulty breathing and couldn't catch my breath. It's kinda a long story but my Dr. Sent me over to the ER and I was admitted. It took 8 hours of breathing 52-60 breaths/minute, several doctors watching and wanting to intubate me (breathing tube), countless nebulizer treatments, several doses of steroids, and a b i-pap machine before I finally started catching my breath. I only remember bits and pieces but know that they were all expecting for me to tire out and need for them to rescue me. Praise God though that at the same moment I was starting to catch my breath our church was having a service (1st Thursday) and were all praying for me at that exact moment to breathe! God is good! Had I been intubated I would have had to be taken off the list for a period because of it. I basically suffered an acute flare up caused by my disease. Praise God no embolisms (blood clots) and no visible viruses. Down side is that my disease has progressed and I still need new lungs. Plus side is I am at the top of the UCLA list!! Anyway God is good and I am back home...on strict rest!

Where Have the Days Gone?

I can't believe the last time I blogged was June 28th! I saw that right now and thought "why haven't I blogged? What's been going on?". Well for one I had a near hospitalization on Sunday (7/1). It was really scary for me, Manuel, and my friend Laura. We were at church and I was coughing up a lot of phlegm during the service. I was feeling as if I was interrupting Pastor Steve so I told Manuel I was going to go to the bathroom. My friend Laura (who happens to be a nurse) came in to see if I was ok. I tell you I can't sneek out of any room without being noticed. In this case however, it was a good thing. We sat on the bathroom floor together while I "coughed up a lung". I was having a real hard time breathing and took quite awhile to recover from the coughing. Once I felt better we left the bathroom and Laura went to find Manuel (service was over) as I held up a wall and smiled (not really wanting to). Once Manuel reached me he linked arms with me and we started to walk to the car. To me I swear that car was parked so far away. I just looked at it and it was not getting any closer with all the steps I was taking. I couldn't do it anymore and literally was being held up by Manuel. I felt as if I was drowning on dry land. I couldn't get air, I couldn't gulp it, my mouth was open my head was stretched all the way up and still couldn't get any air. At this point Manuel and I know that I have to FOCUS on calming down. When it gets that bad your instinct is to panic. Just like in the movies when someone is drowning. IT WAS HORRIBLE! Once we got home I had two more major episodes. My friend Laura saw one of them and said that it even scared her and she's a nurse. I am praising God that I was with people who could take care of me. I am praising Him that I wasn't alone with the girls because they don't need to see that. I stayed in bed the rest of Sunday, by night I felt a lot better but was too afraid to do anything. My brother and his girlfriend came over and we all talked for two hours on my bed. Cute huh? Then Monday I stayed home and made it through half of the house because I was still scared of having another episode. On Tuesday I spent the day with my mom, aunt Evelyn, uncle Julius, cousin Mazie, and brothers. We went to breakfast then back to my house and then later they helped me go to Costco to do my big shopping. On the fourth we were all back at my house for a barbecue (Manuel's mom, sister, and grandma came too) then we went over to Ventura College for a fireworks show. That was such a nice day! Earlier in the week I was feeling really down about not being able to go out and do all kinds of things with my family since they were all in town with no work. Sometimes it feels like I am watching everyone else live there lives while I sit at the dining room table and wish to go out and do the things they are. I know this is for only a season and I am blessed to have the life that I do, the fun that I do, the family that I do, the laughter that I do, and the breath that I do. However, I would be a fake if I didn't let you know that this is a feeling that I have from time to time. I am still thankful for everything that I have, especially my diseases, I wouldn't trade or wish it to be any different because every trial and every ache teaches me and brings me closer to my maker.
2 Timothy 3:12-13 In fact, everyone who wants to live a godly life in Christ Jesus will be persecuted, while evil men and impostors will go from bad to worse, deceiving and being deceived. But as for you, continue in what you have learned and have become convinced of, because you know those from whom you learned it

"Stuff".....

Have I mentioned that I have "stuff" to do? In case you can't tell, I've not done my "stuff". I have a tendency, as many of you know, to be a perfectionist. What happens to a lot of people like me is that when we have stuff to do we mull it over in our heads, get overwhelmed, and push it away as long as we can. We, at least I, don't allow ourselves to get into the "stuff" until we know we have worked it out in our head (perfectly). So I have a list (in my head of course) of "stuff" I need to prepare before I get "the call". Are you tired of all the "quotes" yet? Okay anyway, I am not in any sense of denial about what is going to happen or anything I just think it's a little overwhelming. I say little but really what I mean is very overwhelming. In my mind I can't get it right therefore I am not getting into my "stuff" yet. A couple of months ago I was so scared and overwhelmed over a long list of "stuff" I thought that I needed to prepare. That list was physical objects that I thought I needed to get ready for the girls when I go in for surgery. I was so consumed by that "stuff" that it literally was ALL that I thought about. It was an obsession, something I used to numb the inside. Thinking of the "things" in some way helped me put a visual on what my family and I are about to go through. Does this make sense? I can't be there to hold there hand, pray for them, and do for them. So I was obsessing over what I could do for them in the sense of gifts for while I am away. The list of "stuff" kept getting longer. Well God broke me of that and what I have learned is that I thought those "things" were going to help my girls feel like I was there with them. So they wouldn't feel as scared. They would have the gifts I pre-packaged to feel closer to me. Obviously this is wrong. I can never expect to know just how difficult this time is going to be. I can't expect to give them the feeling of safety they will need in that time. Who am I to even think I could? Every "thing" that they need during these horribly hard times will need to come directly from God. Our jobs as parents, my job as a mother, is to show them how to rely on God completely for every "thing". So even though my list of physical stuff has gotten shorter I now really do have real "stuff" I have to do. I have realized that I haven't been having very important conversations about what is going to be happening with my parents, brother, and other family. I have worked this so long in my head, it's not perfect yet, that I keep putting off the very real things I have to do. It's so much easier to have a list of non-emotional stuff to do. Like laundry, dishes, beds, drop the girls off at dance camp, go to vacation bible school, and go to the grocery store. But in this perfectionists head there is a voice that is screaming "YOU HAVE STUFF TO DO"!

I have to go tomorrow and begin my Hepatitis B vaccinations! WooHoo! Yeah right! Anyway this is just another thing I need to do in order to prepare my body for the transplant. I was also told by my surgeon back in April that I should loose 10-15 pounds. At that time I literally prayed and said "okay Lord this is going to have to be ALL you". I have struggled with eating disorders in the past and now know that dieting is not mentally good for me. Anyway that is a whole other blog. I went in on Monday and PRAISE GOD I have dropped 14 pounds! LET ME MAKE ONE THING CLEAR....THIS IS ALL GOD. Now I have been told by my transplant coordinator that I need to be on a high protein diet. This is also to prepare my body for the transplants. It will help for recovery. So can you help me pray that I am strong enough to do this for the purpose needed and not allow it to turn into what it use to be for me, a disorder. Okay I'll stop typing now! I bet your tired...go rest now, I'm done!

I'm on the List!

As of Wednesday, June 20th, I am officially on "the list". I am an official listed patient awaiting a double lung transplant with the United Network for Organ Sharing (UNOS). WOOHOO! I had thought for awhile that I was listed but started wondering about why I hadn't been contacted by my new transplant coordinator. Then we came to find out that there was a hold up here in the local Ventura office where the nurse "forgot" to put the financial authorization into the system. Well that was fixed and here I am today. There are a lot of details and my plan is to try my best to explain them here, for you, this week. I'm thinking of doing a weeks worth of little blogs so I don't do another of my SUPER LONG blogs. As it stands I could be called anytime between now and six months. Wow! We are praying for GOD'S perfect timing in all of this. Only HE knows when this should and will happen. Can I please ask you to pray with us for that and for a couple of other things?
**that we continue to comunicate correctly for our girls in there understanding of
what is happening and what will be happening
**that the girls be lead by us, correctly, to rely on GOD for everything
**that the girls be able to come to us and God in prayer with their worries
**for the donor, who's lungs I will receive, and their family that they see the
mighty work of God in their lives. That they know or come to know GOD in their
time of sorrow
Thank you so much for the time you take out of your day to catch up on what's going on in my day. I pray for you often. I know that probably sounds fake but I really do pray for you always. I will have more on Tuesday. Tomorrow I go to UCLA for testing and labs. Have a good day!

I've Been a Bad Blogger!

Sorry! Manuel just recently set up our DSL and so now I full access again! The right heart catheterization went well. Praise God, they did not put me to sleep! They numbed the area and went in through the artery in my neck. The procedure was about 30 minutes and the most painful part was when the numbness went away and my neck hurt so bad. It felt as if the artery was just going to burst but that went away after 24hrs. Dr. Saggar (cardiologist) said that the pressures in my heart were within normal range, on the high side of normal, just under the high range. So, my heart is healthy! This in itself, at least to me, is a miracle being that most people who suffer from lung disease also develop heart disease. I am so happy about this! Just another way that shows me God is taking care of me! I also have another praise, I have had VERY minimal joint and muscle pain! We have all been praying for healing in my body and in this area I have been feeling GREAT! I keep quietly praying and asking "okay Lord did you completely heal me of this or will it come back like last time?" But it doesn't matter which it is because I am healed for this moment in time if it does come back, and I am healed forever if it doesn't. FINALLY a WIN, WIN situation. Well there is my little update. Tomorrow I will post a blog that is more upbeat! We had a great weekend and I can't wait to share. Love you!

Quick Notice

Ok, so tomorrow (Wed.) I will go in for my same day procedure at UCLA. I will be having a right heart catheterization done. They will put me to sleep, go in through my neck and into my heart. They will be checking the pressure in my heart. If the pressure is too high, not good, yet, it helps with higher placement on "the list". As of yet I am still in the process of being put on "the list". They are awaiting financial authorization, which should happen this week. Please help us pray that authorization be granted and that it happen soon. Please pray that the anesthetic not make me sick tomorrow, which always seems to happen, and just that I feel normal after. My mom will be taking me, so please pray for safe travel there and back, hey let's add in NO TRAFFIC. I am scheduled at 1:00pm. I appreciate all of your support and love, words cannot even begin to express how thankful I am for all of you! I love you!

Did I mention....

that I've been sick? Started off as a sore throat. When I went to see Dr. Lynch (UCLA) Monday I told him about it and he warned "getting sick can lead to pneumonia, you have to stay healthy. It can be fatal for you because you have no downhill from 17%" Yeah, sounds scary huh? Well, then I got really bad body aches, headaches, cold chills, fever,lethargy,weakness,and loss of appetite. I went in on Thursday they gave me an antibiotic on the chance that I was developing pneumonia, a 5 day bout of prednisone (whoopee)and sent me across the street for x-ray. They called me Friday at 4:45pm to let me know that my x-ray was positive for pneumonitis but said to just keep taking the meds and I "should" be okay. Reassurance. Went into the ER today because my good friend Laura,who is a nurse, found my local pulmonary group doctor who suggested I be checked again and put on IV antibiotics. They checked and PRAISE GOD all traces of pneumonia were gone! They said the antibiotics I was prescribed were what they give at the hospital for pneumonia so it is working. They wanted to keep me for my lungs, it's funny when I go in and it's a whole new set of nurses and doctors and they get scared over how badly I sound. They want to give me a bunch of breathing treatments and pump me full of steroids. I warn them they don't work, they try then they say "wow you're still wheezing really bad and working really hard". I just told them that my breathing felt no worse than a "normal" day for me. This is how it always is and they made me promise to go back home and REST. So that was our Saturday, now I'm resting, watching everyone pack my home, and BORED! PRAISE GOD FOR THE ABILITY TO BE BORED AS I COUNT (literally with all the people helping, offering, calling, texting, and praying) ALL MY BLESSINGS!

IF YOU HAVEN'T READ YESTERDAY'S BLOG PLEASE DO, IT'S IMPORTANT!

THE DECISION

On Monday I made the decision to ask my doctors to put me on "the list". It was a good decision especially since my lung capacity has gone down even more than the last time I was tested. In March I was at about 20% lung capacity and now I am at 17%. This is total proof that God is sustaining me. To function even the little bit that I do just screams of how HE is giving me the strength that I have. It is AWESOME! I will be put on "the list" within the next week or so. I have to get a right heart cath done first. This measures the pressure of my heart and if the results don't come back good then that will give me a couple of more points for higher placement on the list. My age is a big factor. I will be told by UCLA the general category of where on the list I am placed but they will not tell me the #. This is because waiting is waiting and they don't want you to be focused on a number when there are so many factors put into when you get your organs. I will be posting links on the left tool bar to UNOS (United Network for Organ Sharing) and UCLA Lung Transplant, in order to help you understand the process and struggles that we will be going through. I love you!

WARNING: THIS IS A WEAK MOMENT

It's just so hard! I am emotionally overwhelmed! I'm not being outwardly emotional but in my head there is this section that is going AAAAAAA....OH NO, OH NO, OH NO.....AAAAAAA.....EEEEEKKKK.....AAAAA....
Lately this is the white noise in my head. Most of the time I tune it out and just don't pay any attention to it. However, today I can hear it. There are so many negative things being put in my head right now and NONE of them are from GOD! It feels like this week I can't hear HIM because the noise is SO LOUD! It's not anything that is going to break me it just is so hard! You know that feeling we would all get before a big test in high school? The nervous feeling? The dream that you forgot to study? The lack of confidence? The inability to concentrate? The lack of sleep even though you're trying so hard? I know my prayers are being heard, I know that he is speaking to my heart in a soft whisper, but is it wrong to ask God to YELL at me because I just can't hear over the dumb chaos? I have felt for a long time that the answer to the question on hand (is it time to be put on the list?) has been given to me. Especially when I have prayed specifics and have had the answers in which were being put onto my heart shown to me through the words of a doctor, stranger, bible, bible study, child, friend, and husband. They not knowing what they said and how it came from God because of something I prayed about. But how do I know for sure? I've been asking for a CONFIRMATION to what I believe He is speaking to me. Do you think He is saying "I have already spoken"? Do I know my answer, for sure, if when I think it all through I always end up back at the same thought? Something Manuel said to me this morning keeps playing over and over in my head, "Babe, how long do you think you can go on like this?" Hmmmmm.

UPDATE

Dr. Ardehali examined me, reviewed my health and said that definitely a transplant is needed. No question. We were waiting for this appointment to tell us whether he thought it was time for me to be put on "the list". Even my transplant clinic doctor had said that he wanted to see whether Dr. Ardehali wanted to proceed. So imagine my surprise when he told us that he wants us to tell him when we thought we were ready. He wants to make sure that we fully comprehend the severity of transplantation. He said of all transplantations lungs are the most severe. He wants to know that we fully understand the process in which we will go through pre-transplant and post-transplant. We also met with a social worker in charge of transplant patients. We were given a list of 50-60 medications that I will be taking post transplant. I will get more into those in another post. We now need to talk to our health insurance to find out which of the medications they will cover and which they won't. We found out that many of the immune-suppressant drugs will more than likely be the most expensive. We will also be talking to our insurance about the $$ amount of our yearly and lifetime cap. Manuel told Dr. Ardehali that as of yet we needed to go home pray about it and speak to our insurance. A year ago Manuel had spoken to our insurance and was told that it would be fully covered. We just now need to double check and verify exactly what is covered. Yesterday I realized that I have been waiting for a doctor to be the way in which God was going to let me know whether or not it was time. I now can clearly see, by it being put back in my hands, that the only way that decision is going to get made is by continued prayer on the reassurances that God has been giving us. We stand firm on his promises and know that He will never leave us or forsake us. We can't go wrong if we are having faith in his grip on our lives. I get scared often. Though when I'm scared I remind myself that FEAR is not of God. Don't let me fool you though because it comes often. This is a constant struggle. We are in a fearful situation but we WILL CONTINUE to have faith. WE WILL CONTINUE to seek the Almighty Physician, God, and follow HIM down the narrow path. I had a very emotional day today and I'm glad that I am ending on this note.

What I am claiming today:

Romans 12:1-2 Therefore, I urge you, brothers, in view of God's mercy, to offer your bodies as living sacrifices, holy and pleasing to God-this is your spiritual act of worship. Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is-his good, pleasing and perfect will.

Romans 8:18 I consider that our present sufferings are not worth comparing with the
glory that will be revealed in us.

Isaiah 42:6 I, the LORD, have called you in righteousness; I will take hold of your hand. I will keep you and will make you to be a covenant for the people and a light for the Gentiles

PLEASE HELP US PRAY:
1) for God's will to be done in this situation, that our decision be guided by him not our selfish wants
2) for strength for our little family and for our extended family
3) that God somehow and someway provide for the finances of pre-transplant and post-transplant care. That the insurance cover all of it.
4) for communication to go smoothly between doctors, insurance, authorizations, and case managers
Thank you for your love and support! We love you dearly and often pray blessings over you who come here because you care.

APPOINTMENT WITH THE SURGEON

Just wanted to let you know that Manuel and I will be going to UCLA this Wednesday, April 18th. We will be meeting with the surgeon, Dr. Ardehali, who will evaluate me and my lungs. He will give his suggestion on whether he thinks it is time to list me for the double lung transplant. The girls will spend the night with their aunt and uncle on Tuesday night because we have to leave home at 6:30am for an 8 am appointment. I am hoping to post a blog letting you know what happened at our appointment as soon as Wednesday afternoon but might not feel up to it until Thursday. We appreciate all of your prayers and support! I love you, Julie

A Quick Update

I just realized that I never blogged about my last visit to the UCLA Lung Clinic. I went in to see my doctor, whom I thought was the surgeon, and learned that he was one of the surgeons but now he runs the transplant lung clinic. Well he said that he thinks it's time that I go over to see the actual surgeon. Whom has a really smart sounding name of Dr. Ardehali. He feels that I might have to go on "the list" sooner rather than later. He had hoped that we would be able to wait a little longer but feels that with my recent hospitalization, need for oxygen, and decrease in daily activities it is more likely to happen sooner. I have had to go through a series of doctors in order to move through the clinic. Obviously "moving through the clinic" is not a good thing. It means a decrease in health. So unfortunately I have moved through the clinic and am on my way over to see "THE SURGEON"(dum-de-dum-dum). We will be going to meet him on April 18th at the hospital. I was told that I have to get a series of things done in order to start this process. Being put on the list means that you have to go through a rigorous process of tests, scans, and labs. They basically have to know everything about your health, every aspect of it. So I've been very busy going to all sorts of appointments in order to do all of this by April 18th.

Please help us by continuing to pray for God's will to be done in all of this. For Manuel, the girls, and I to continue to grow closer to Christ and each other in this time. We love all of you so much and appreciate all of your love and prayers... I just want to let you know that I am going to try to label my blogs to where the HEALTH related issues will be under HEALTH and all others will just remain unlabeled. Hopefully it works. This way you can go straight to HEALTH if you want instead of reading all my other blabberings! Love and blessings to you all!

Well I've been feeling a little more human lately. I don't know how anyone can take Vicodin for pain on a daily basis. It makes my stomach hurt, makes me groggy, and I get in this funky mood. I had to finally stop taking it, thanks to Dr.Grossman. Well as far as my Rheumatoid Arthritis and my muscle pain, I am still having a hard time. When my pain gets bad I just lay there and cry out. The only benefit to the Vicodin I was taking was that it was the new stronger one and would minimize the pain. Which is the first thing I have found that will do anything. Now I have to weigh whether or not my stomach can handle it when I need it. I have decided that I will only take it when I am in excruciating pain that doesn't even go away when I stay still. The muscle pain gets so bad that it feels like someone is just slicing at them with a razor blade (that's the best way I can describe it). Well, last week I went to see Dr. Grossman (she's my Rheumatologist) and she had a lot of guesses but still no firm answer as to what is going on. She is still thinking that right now I am suffering from Rheumatoid Arthritis (only based on labs). She is still not certain as to what else could be going on because I have a lot of shoulder muscle and joint pain (pain doesn't even describe it, I really mean failure). She says that generally that doesn't happen with Rheumatoid Arthritis. So once again I am a big ?mark. She did give me some new meds to try, although not the strong stuff because there is a lot I can't take because of my lungs. That's the thing I get no relief because the stuff they would give for that is not good for the lungs and would hide the symptoms to be able to know what exactly is going on. So I have to have these pains and problems in order to help it show in my labs and to describe it. As I sit here and type I can feel my right forearm beginning to start up. She also ordered me to get some x-rays and a TB test done. I got the TB shot yesterday, which is only so that they can get a baseline to start a new self injected (woohoo) med. Then I have to go today to get the x-rays of my shoulders done. Then Thursday I am back at the Dr.'s office to get the TB test read and something else done. I get confused with all the medical things I have to do. On top of this stuff there is a bunch of things I have to get done for the Lung Clinic. I will have to post on that later. Just wanted to give you another long update, thanks for reading it all. Thank you for all your prayers too! I am feeling more like myself in respect to attitude, so thanks for the prayers. Love you!

F.Y.I.

Just wanted to let you know, I've been in the hospital. I don't feel like blogging and I don't feel like talking. I don't mean to be rude, I just don't feel good. I just wanted to ask you to pray and I just wanted to let you know where I've been. I went in Wednesday night around 8pm and came home Sunday around 430pm. I'm on the road to recovery (I think) and have a week of visits to UCLA. I might feel up to a blog sometime soon but right now I just want to lay in bed and sleep. I love you and would appreciate all the prayers we (my family) can get.

I've Been a Little Quiet

I haven't been feeling very good lately so I've been a little quiet. I have been having a lot of muscle and joint pain in my shoulders and arms. I am putting up with it as best I can. I also tend to want to stay quiet. I tend to not want to associate with many people when it gets this bad. In addition, as you all know, I have been getting use to wearing the oxygen. I actually have learned to be okay with it. An older lady came up to me the other day, she looked me up and down and said "what, you have a cold or somtin?". I loved that! She reminded me of the granny on Golden Girls, so sassy. I have been able to talk to people, tell them of my condition, hopefully all to glorify God. I have had to tell people who have known me casually and never even knew what was wrong. No more denial now huh?

So, what's new? Well we celebrated Manuel's Abuelita's 90th birthday! I hope to post the pictures and a blog on that soon. Analiese has been selling Girl Scout cookies again and has done very well, especially with the help of her grandparents who took some orders at their jobs. Now comes the task of delivering over 230 boxes. EEEK! Analiese has also officially begun another track season. She loves to run and has extra incentive to do a little more for mommy. Hopefully some day I can run with her, I use to run and would love to do it again with my little girl. She is excited to be out there again. Bella is quite the student who loves to learn and has put the Almanac down for awhile. She now exclusively reads the Algebra book. Bella is also addicted to "lipstick", which is pink chap stic, and has to have it taken away because she gets a little too obsessed. Manuel got to go to the 2007 NASCAR NEXTEL 500 in Fontana with Mark and the boys. I on the other hand love to play games. I have never been into board games like I have in the past couple of months. I have been playing Boggle Deluxe, Scrabble, Pop 5, Cadoo (with the fam), Othello, and Whoonuu (again, with the fam). I have been obsessed with Boggle Deluxe and Scrabble. Manuel and I have now begun to have marathons of these games. It can get very competitive and many of our friends get phone calls in order to settle a couple squabbles. I thought we were done with the game marathons when we overplayed Yhatzee and Othello but we have found some more and am sure we will keep searching. I must say I have fallen in love with most Cranium games. I highly recomend Whoonuu and Cadoo. For a good game to play with friends you have to play Cranium's Pop 5. My friends Laura and Rochelle introduced this game to Amy and I, it is so fun! Well that's enough for now. Off I go to try to have a good nights rest. Love you!

Can I ask a favor?

First off I would like to apologize for my last post. I now realize how redundant it was. At the time I needed to work it out more for myself than anything and for me it takes being redundant to get the job done. So sorry.

Anyway, I wanted to let you know that I now have oxygen at home and am getting use to using it. I am still waiting for them to bring me the portable oxygen for when I leave the house. I wanted to ask those of you who have kids if you could please let them know that when they see me I may be wearing it. I don't want any of them to see me with it for the first time and be confused. I so love to interact with all of your kids and I just don't want them to think it's not the same person. I also think it would be easier on my girls. I know it will be different for all of us to get use to seeing but it just would be better if it weren't a surprise to the kids. Thank you and God bless you!

UCLA Visit

I don't really even want to write this. I do want to keep you updated on my health though, so here we go. I NEED TO START USING SUPPLEMENTAL OXYGEN. I went to UCLA yesterday and did a 6 minute walk. The nurse had to ask me to sit down 3 minutes into it because my oxygen saturation went down to 83%. I have not had a problem saturating oxygen so this is new. This is just another little step down in my health. The good thing is that I don't need oxygen all of the time, just during activity or bad days. I will continue to have good days and bad days. That's just how it goes. Dr. Lynch (the surgeon who will perform the transplant) says I definitely need a double lung transplant (as we all have known) that is not the question. The question is when. We (and the Dr.) are waiting for the girls. We are giving them as much mommy time as possible. Dr. Lynch does not like to do transplants on mommies. I am able to wait because I still do have good days and am even happy on my bad days (mostly). Until I can no longer be happy or tolerant of the bad days and don't have good days I will not have a transplant. There is no time frame that the Dr. or we have, it could be a day, week, month, or years. I need the oxygen to preserve my heart. Thus far my heart is in good condition. I will soon have another EKG to make sure. I was once again told that I am a "unique" case and not even the health insurance has a code # for what I have. So tired of hearing that! So the way it goes is, they will continue to monitor me closely and frequently. Again I have to make sure I don't get sick, stay home on my hard days, and thank God for ALL of this. Right now is an awesome time in my life. I get to focus on LIFE. I get to know that right now really counts and enjoy it. I just really hope and pray that on my bad days I can be patient with my loved one's and understand that they are going through this too. So yes, you may see me with a little clear tube around my face but it is still the same me so don't worry. I have more to write about this but I think I still need some time to process. I love you!

It's time

Hello to all my loved ones out there! I begin this blog with much hesitation since it's not of the happiest news.

It's time. Manuel and I went down to UCLA yesterday and learned that it's time. My pulmonologist said that I need a transplant and that now is the time to start the process. My lungs are deteriorating. We've known that it was coming and I have been so open in letting you all know that at some point this would happen. However, it was still a slap in the face. Stupidly I thought, sure this is going to happen, but probably not for a couple of years. Oh, how human I am! Well the time is here. God is answering another prayer and reaching His hand out to me. He is giving me the help that I have been asking for. Almighty Father Gracious and Loving! How Great Is HIS Love.....great enough to hold me when I am hurting, whisper to me when I am lost, love me when I am scared. I, we, have confidence in His work. This is HIS work. Please help us in praying for HIM to hand pick my transplant team. To give them knowledge, skill, faith, and to bless them abundantly for what they do. Pray for the soul in which will be brought to HIM in order for me to receive the gift of life. I pray that this person know HIM and be able to meet HIM on the day of their rest. Pray for my precious husband and girls! For strength that only HE can provide during this process and for our walk to be guided by HIM. Pray for all of my family and dear friends.

My current pulmonologist at UCLA is handing my case over to the transplant doctor. I will be contacted by his office. I will begin a process of new exams and more in depth studies by him and his team. I don't yet know the length of time for any of this. When that process is over I will then go onto the transplant list and wait. Once again I don't yet know the amount of time. My case has floated around many doctors, all of whom have no answer as to what it is, why it is, or how it is that I am in this situation. But they all agree that it is and it's only getting worse. So this is why we start now before I am in the hospital and in an urgent state. I have to take care of myself and my family right now so that I don't get to an urgent state.

The help...please help me in being cautious. My life depends on health right now. So please let us know if you are sick before coming around us. Any minor thing (sore throat, cough, runny nose, cold, or cold sores) can be detrimental to my health. I'm sorry if I have offended anyone but I have to be safe. Please help your kids to not share foods, drinks, lip glosses with the girls.

I love you all beyond belief and am blessed to be able to share even the scariest of moments with you. God bless you!