Low low low

(<---- I just like that song :P) Christmas is just around the corner :) I just love all the decorations my house is looking pretty cute inside hehe. I was really hoping I would have my match by this time and be having a transplant by Christmas :( hey I can have high hopes. I am very determined to get the word out about my needing a kidney, as well as about organ donation in general.
In the mean time dialysis is going pretty smooth, have not had any problems getting sick, well for the most part lol. Had a few time where my blood pressure dropped then I felt like I wanted to drop to the floor ...not good. Even had to spend a whole day on the couch one day because it was too low and every time I tried to walk I seriously just about blacked out. So I am slowly being taken off blood pressure medications. Thats a big deal because my bp used to be so high that I was on five to six medications and some days that did not even help. Urg well not much else going on  right now dialysis,dialysis,dialysis lol . Good nights loves :p

Princesses,dragons, Kights and Witches.

       When we are children we read lots of fairy tails about Princesses and evil witches, about Princes coming to the rescue and far away adventures.   I used to wish I was a mermaid Princess :P  That I would be able to have amazing underwater adventures and be the most beautiful mermaid princess. Lol of course even though I knew it was impossible it was still fun to imagine.  To imagine a life so amazing, being unstoppable and to always have the courage to go on so many dangerously amazing adventures. As a child most of us do not think we will have to face so many real dangers. 

           But in a way life has become like a storybook, just a different type. There is the evil I have to overcome and there is a hero, but no knight in shining armor; that parts on in the books :P Im the heroine and the princess; and I have to fight my battles day and knight. I look those nightmares and villains dead in the eyes and tell them "you will not win today." Its a constant battle sometimes deciding whether or not I am gonna give up and let the evil win.  I sometimes have those thoughts to just want to give up cause thats the easy way out. I mean why take the scary path through the dark wood crossing paths with unthinkable dangers? And I just think to myself at the end of this long, very long dark tunnel there is a glimmer of light. I can not see the light it so far sometimes,but I can feel it. 
Its hard sometimes but we all just got to think to ourselves that its all worth it,  the path may not be clear right now,but it has a reason. And we all have dragons to sleigh at sometime or another.  No one can defeat it for us, you and only you can conquer it. So always have hope and be as brave as you can, just never give up.

So thats my lil poetic fairy tale metephor :P  ug I should really get some rest, I am not tired at all but its already 3am and I suppose the Princess does need to attempt to get some rest. This is when being Sleeping Beauty would come in handy haha.  Btw I take that Princess bit to heart still even at 26 hahah. Hey whatever gets me through my day. SO I guess I bid you all a Good Night and  Good Morning <3

Keep On Walkin

Well I had a friend being tested and had gotten quite far in the process and it looked really hopeful..well a few days ago I got the dreaded phone call, that he was not a match....That kinda burst my bubble...But there is still hope. He and I opted to join the Paired Donation program so we will continue our workups and get on the list to hopefully find my match that way.....It sucks cuz he did not match but its still very hopefull with this option, I just have to be patient and wait....but in the mean time I am still having more friend start testing, cuz you never know someone could be my match.

Love is what its all about

                  I try to put a lot of thoughts into what I post,thats why it takes so long some times for me to come back and post haha.  Right now my health is pretty continuously the same; four days a week dialysis, take lots of medications and just stay home alot. 
Just so its clear kidney failure is not contagious lol......thats how it feels sometimes, people have alientated me from there life to the point that I really do not have a personal life anymore.It feels like people get so freaked out about hte situation I am in that they totally close me out. I think its kind of funny that people always say they  always pray and send good thoughts my way...but then people never call or want to hang out with me....ya that makes someone feel really loved....


On a more exciting note. :P So I went to the Breaking Dawn Part 2 opening night with my mom. I switched my dialysis because hte movie was on a Thursday night, I was not about to miss that movie hahaha. O-M-G that was by far the best movie of the whole series I think :D
Iv read all the books and the last book is my favorite, and they really an amazing job on the movie. I think I was near a heart attack on certain scenes haha. Seriously it was some intense stuff haha. I am ready to go see it again.

So today is Thanksgiving , yuummm I am ready to start eating all the delicious food :P Got dialysis in mid morning, then having another whole Thanksgiving feast Friday at my Aunts house, cant wait. I love spending time with the family,It helps me remember that I do have a small circle of love and support. I am grateful because with out my family I probably would not be here.No joke I was in a medicated coma May 2011 and the doctors had said I was going to die. But I pulled through thanks to the help and love of my family.

Be thankful for the people you do have in your life, and the days you have lived. You never know what is going to happen. 

Much love to alll and have a blessed and delicious days :p

Happy Veteran's Day

This weekend was Veterans Day, thats a really important day to me, not only do I like to remember all who have served, and celebrated my cousin SSG Frank J Gasper who was killed in action in 2008, but Veterans Day is also Franks birthday. I really do miss him so much, sometimes I act like hes not really gone just away on a mission He and I were really close.

Thank you to all the past and present service men and women.

HAPPY B-LATED 
VETERANS DAY

Caterpillars to butterflies

          Well life just keeps trucking along....sorry I'v been MIA.The fan on my laptop broke so I had to mail it away for repairs for a few weeks, I got it back and things have just been kind of busy. I'm alright no worries, just been caught up  with a bunch of things this last month. October is over, but its was eventful and wonderful month.I did a presentation at the Mexican Concilt Center about Organ Donation, turned 26 :p celebrated Dia de Los Muertos, and Halloween.Still on the search for that matching kidney.....

Sooo I volunteer with the Organ Donor Network when I get a chance to, they had me speak at the Mexican Concilt Center, promoting Organ donation to the Latino community. There is such a need for more people to be organ donors. People know about donating organs after your dead, but a lot of people do not think about donating while you are still alive. Everyone is born with two kidneys but you can live with one, your liver you can donate a piece as a living donor because the liver can regenerate itself. The body is so amazing. 

I turned 26 yikes I cant even believe that lol. I like to spend my birthdays with my extended family. Its an excuse to get together. One of my Aunts and my young teen cousins came for a visit. We drove to Santa Cruz visited the Monarch sanctuary near Natural Bridges.100,000 Monarchs make Natural Bridges there temporary home each winter from  mid-October through mid-February the Monarchs form a "city in the trees." Its so amazing to see them. And you never know what your going to get, they have life of their own so they choose whether they wanna come out and play or not :p It was a really great day. The weather was beautiful, after our visit to the sanctuary we went to the beach and tide-pools.  

Then the following weekend my mom and I planned to go to the Dia de Los Muertos celebration,because that's part of our culture, which I love so much. To welcome the dead home for a night. Well I got a lil surprise, lol I got a knock at hte door the morning of the celebration ......and it was my other Aunts and cousin. LOL omg I was so surprised. Totally not expecting them. haha So we got all painted up and walked in the parade and celebrated. 
I am so lucky to have such loving familia in my life. We always have so much fun, and I forget I am sick most of the time. lol though there's those moments where i get really tired and have to sleep, no avoiding that. Then we had Halloween did not do much for that just stayed home passed out candy.

So donor status, well I have one friend going through the process at the moment :) no word on if hes a match yet. He has not been ruled out yet still continuing the process so thats a good sign :D I have a feeling transplant is near. I just have to keep thinking positive and look forward. Its been almost two years now that I have been on dialysis. Dialysis is stable for the most part, have had some up and down moments lately just because they have to adjust my dry weight. I just have to dwell on the good moments and think about all the good things in life, and ignore all the crummy things going on in my life. I know I am a strong person and I have to be, I have no other choice but to be strong.If I'm not the alternative is to give up and face my maker.I know that not everyone could handle all the I have been through, and I would not wish anyone to ever have to. And everything doe happen for a reason, things surely are sucky right now, I'v lost alot of friends because they cannot handle the intensity of my life. So I get lonely sometimes enduring this rough path I live, but its all for a good reason...what that reason is right now I do not know lol but I'll figure it out eventually.  Kidney disease is a big part of my life, and always will be, I want to continue to help spread the word even after transplant. I want to spread the word of love and hope, and let people who are going through the same thing  know that things will get better. God has a plan for everyone and it will all happen in its own time. We just have to be patient, one thing I have not been good at lately. 
Lately I have been dreading going to dialysis, sitting in that chair four days a week for three hours as it sucks the life out of me.It dictates my life. I have to think this is only temporary. Happy thought, even when it seems impossible.
Please help spread the word about my needing a kidney, as well as about organ donation. 
https://www.facebook.com/pages/I-need-a-Kidney-DonorSave-Marina/291941610909908

Thank you all so much for your support. Lol so I will continue to write my blog, sorry it to ok so long. 

I'm Back :p

Urg so I finally got my computer back. I have much to fill you in on :p but I'm a bit tired at the moment to tell it now. So I will probably do it later today :) I am still alive and well, still on dialysis and searching for that wonderful person who will save my life. I hope everyone had a great week and that they continue to have a wonderful weekend <3 much love to all.

temporarily out of order

hey soo the fan in my laptop has stopped working. so i had to send it in for repairs. they said at most two weeks.soooo with the abscence of the laptop my blog will bloggin will be down temporarily. the search for kidney donor continues and dialysis is stable. im am as healthy nd happy as one can be in this situation.much love nd talk when i can

Hope

     I'm a bit of diva sometimes, I like to think of myself as a Princess, to the max :p To the point where I have my own lil tiara collection haha. Hey you know what ever gets me through the day, the more power to me. Everyone needs a lil spunk. Life is never what we expected and you just gotta roll with it. 
    Somedays its hard to deal with all this , I wake up and think, do I really have to go through this? Why is life so not what I imagined? Sometimes I wonder if I am just living in a nightmare, hoping to pinch myself and wake up. But then I rememeber this is real life, this is my reality. God has a reason for all that he does. And even with all this so much good has come out of it, Iv grown so much as a person. The tragedies of my life has made me more beautiful and stronger than I could ever imagined.  <3



       

Wonder...

You ever wonder about what you should have done? How could you have done something differently? Maybe wished you said something to some one?  Those were yesterday.....you cant dwell on yesterdays. Look ahead  and wonder what's in front of you. ...........

I used to do a lot of what if this? and what if that? It just ends up making you crazy and upset. 

Anyway, not much going on, pretty much same ol routine. Did hear from a dear fellow transplant buddy. Had not heard from him a long time. We met way back when my brother had his in 2003.  It was good to hear from him and be able to talk about whats going on, and not have to feel like I was boring him,and that he knew already what I was going through. Its good to have those connections with people who have or are going through the same stuff. You can never have too many support systems. :)  

Lol theres a lot going on in my head at the moment hahah. Blogging, and in the middle of working on my book. The thoughts are just pouring like crazy.Its like screaming in my head sometimes. Im sure I will write more later. My thoughts are just scattered all over like a collage, gotta sort the pieces :P

What Doesnt Kill You

      What doesn't kill you makes you stronger... My mom says I am too open with my condition, she says its not a bad thing just that not many people my age would be as open and okay with all that I have been dealt. And that I do agree with her on, I'v reached out to many others my age trying to help then overcome all that they have to face,because  it does suck sometimes.How else are other people going to gain hope and have a lil more insight than from someone who's been or going through it? Some people are able to keep that positive attitude almost all the time while others cant. So many bad things can happen in life, believe me I don't wish for anyone to ever feel the amount of pain I have, not even on my worst enemy. At the same time I cant dwell on it all, just gotta pick myself up and keep going. 
 I think part of my beauty is my strength,Iv gained alot of personality from it :P my sense of humor has grown and I'm a lil more outspoken then what I used to be haha. I mean don't put me to talk in front of a big  audience or anything lol, but non the less I tend to boss the hospital around and tell then how it is sometimes lol. Which is not a bad thing, especially when it comes to  your body and your health. Cuz you gotta let them know your a person, not a science experiment. 


That's how Iv survived all this, yes there's been those times Iv really just wanted it all to end. Moments where I just thought that dying would be better than feeling this pain. Somehow I had those moments standing on the edge ready to just fall cuz I'm so tired of holding on, and suddenly like a dove soaring that feeling of hope always comes back and tells me that things will be better soon and to just hold on a lil longer.

Tat my cousin got in honor of me :) he said on his pic caption
"To my awesome,
amazing, beautiful, strong, courage prima!!
 I love you so much!!
This dove symbolizes ur strength to keep soaring,
ur pure heart, ur hope and dreams,
 and the strength God gives you!!
 I will always carry ur strength with me prima!! Love you!! "

I want to be peoples' hope, give them inspiration from my life. 
On that note, so update on me blood pressure is still looking awesome that IV of Nitroglycerin I had in July must have worked some magic because that was the only thing different they did in the hospital. Still on five medications for blood pressure, but somedays I do not have to take them all. Donor status, I have had at least five more people step up to be tested and are in the process, so hopefully one of those is a match. Iv started a Facebook to help my search or rather my match to find me (https://www.facebook.com/needakidney.donor) add it and pass it on :)

Other than that just hanging around, do the dialysis thing ya know :p ? Drinking Starbucks, cuz thats like drinking heaven in a cup hahaha. I keep busy hanging with the people who still wanna hang around me :p That Storytold show a couple weeks got me remembering all the good times we had, lil Miss Mars is gonna have to start breaking out of her shell again soon haha. Thats another upside I guess of all this, I have always stayed pretty clean, I like to enjoy a few drinks now and then, and its ok to. But I have never ever gotten into any kind of drugs, not even tried. I just knew that I had so much more to live for and I did not need to make stupid choices like that.  Anyway this ramble has gone on far to long now haha, Its taken me all day to reword and write just the perfect words.  


I'll leave you with a quote from one my favorite book “Stay gold, Ponyboy, stay gold.” 

― S.E. Hinton, The Outsiders.  :P 

May your day be filled with hope and love, and you find the happiness in your day. 

The Starfish Thrower

What do you know about donating a kidney?

Did you know that the most common blood type on earth is O+?

Did you know that donating a kidney does not shorten your life if you simply take care of yourself?

Did you know that the waiting list for the most common blood type on earth, is also the longest?

Did you know that the remaining kidney will increase functioning capacity by as much as 35%?

They will tell you that there is no gain whatsoever to the donor.

This is not actually true. You gain the knowledge that you reached out to a fellow human being, and gave them a chance at a life. To have children. To marry. To love. To grow old.

There is an old story of a man walking down a beach covered in starfish. Literally millions upon millions of starfish are dying in the heat of the sun, as the tide retreats beneath them. 

Way off down the beach, he can see another man running up and down the beach, each time to the water, and then back. 


As he draws closer, he sees that the man is picking up every starfish he sees, and flinging it back into the ocean. Again and again he scoops up starfish, flinging them back into the sea. 

Finally abreast the man, he asks "What are you doing? You can't possibly save even the slightest fraction of all the starfish on the beach. Nothing you are doing means anything." 

The man stops for a moment, and looks down at the starfish in his hand. "It means something to this one."

Now here is what I want you to do. It is simple, and easy. 

BE THE MAN SAVING THE STARFISH.

One More sleepless night.....

         As usual not sleepy.......this is really getting old. Course I guess it would help if I set a time for myself to take the Ambien haha. Im just not sleepy and I let time get away from me, and when I finally think to take the ambien its like 1 AM. What do I do with that time, lots of lame artsy things haha, and watch old movies.I'm a big James Dean fan. Hes the living end :p
So the move is pretty much settled, I love the new house way better than our old one. The dogs love it to. I turned my book shelf into a shoetopia <3
     Just because I'm sick and hardly go out like I used to does not mean I don't have to look totally cute :p. I don't need to look cute for anyone except me, I just happen to look xtra cute if I was seeing someone haha. Speaking of that so I decided to let myself be open to dating someone. Iv been kind of scared to do that because I am so afraid people wont be accepting of me with the chest cath and all the stuff going on. But I'm putting myself out there, I'm a one man kind of girl though, I can't do that dating many different people at the same time. I'v always been that way. I don't like to share haha. I mean I'm not saying rush things I just dont like to be overbooking, I mean how are you suppose to see if you have feelings for someone if you are seeing multiple different people? I'm really out of practice though so we will see how it goes lol. Like I said I'm just cautious because I don't want people leading me on, then they turn out to be over it all. I got me a new polka dot dress, one the cutest dresses I think own now. So maybe I'll look cute in it and be irresistible to someone haha........... There's this song I love,I like to think its like my theme song Fire Attire ~ "Attire on fire catches my eye, lights up the room like the sun in the sky.Burning me, killing me, now take me away from the light that I found. She is dressed to kill.Burning my eyes but I can't look away.The more I stare its the end of my days. She is dressed to kill. Brace yourself, shes dressed to kill. Iv got to get her, my hearts beating faster now. Shes dressed to kill. ...........haha I love that song. Some my friends from Bakersfield wrote that. I just want to give some that feeling when they look at me :)

I love me some polka dots :p

Haha see it just proves even more that Im just like any normal 25year old, I love looking cute, and always having my face did up, and I just want that one person who sees me for me and loves me for it. Even with all the crap going on. I look at it like a painting, I am the foreground, and all the stuff is the background. Once you see all the foreground has to offer in all its beauty then maybe the background looks ok,not so bad.I mean if I can deal with it, certainly someone else can watch me deal with it. I am woman hear me ROAR :p Now who doesn't want someone that determined hehe. Anywho I guess I better try and get some sleep.
Shall I leave you with a joke to end the night? hehe.....How do frogs die?????........................they Kermit suicide .....HAHA....hey I thought it was funny. :p

May God always be in your heart and may your spirit always be high.Let love fill your life, and joy fill your day. Let every moment in life be cherished and may you always have a hand to hold in tough times in life. Many prayers for me and for all. God bless and good night.

That Moment in Life

          There's always those moments in life when you wonder what the whole purpose was? Iv had so many horrible moments in life, that if I weren't the person I am I would probably want to just let go and give up. But in all those moments Iv had some wonderful beautiful moments too. And thats what you gotta do, just think about the beautiful moments; so that you can have more beautiful moments in your life. For every teary moment make a beautiful moment.
I'v had so many beautiful moments in life.

~Moments like looking at the beautiful Cliffs of Mohere, Ireland. Feeling the wind almost pushing you over the edge, and the sea below splashing. How many people can say they have experienced a moment like that?That's one those moments that I would relive over and over.



~Riding the London Eye, the tallest structure in London! Being able to see all of London through that glass. It stands 443 ft! When you press your hand on that glass to see all the sights, you feel an uncertainty for a minute as to how close your really want to get to the glass to see it all.

~Having high tea with my mom, and telling her all my stories of how it feels like the high tea from London. Sitting in a beautiful room, so prim and elegant. Drinking tea from beautiful china and amazing savory food.



~Coffee! that's always a beautiful moment. The minute you wake up and that aroma fills the house.As you put the cup to your lips you can feel the heat touching your face and your tongue gets that first lil bit and it reaches all the way to the pit of your stomach like a warm hug :p  

So many moments in life and if we dwell on the bad ones how will we be able to enjoy the wonderful ones? There might be times where your steps away from the edge,but you just gotta breathe look over the edge and step back. Tell yourself not today,tomorrow is always a new and beautiful day. 

~Like enjoying a former Storytold performance :p Those have been some beautiful moments. Listening to Loren sing amazingly, and the guys play awesomely (lol I don't think that's a word but I couldn't thing of any other way to describe it haha)The adrenaline rushes and your heart beats with excitement. Every lyric being lipsynced by you and everyone around you. Smiling with joy to every note and chord. :p

~What about when you make other people happy? Making laughter, a laughter so contagious they forget for a moment all that they are going through. Being able to share beautiful moments together.

~Being proud of yourself for your hard work :) and everyone else enjoying it, once again making others happy with your happiness. 

~Seeing your new puppy for the first time,and she sees you, and you both know you are meant for each other <3 

~Meeting someone new and that person makes you smile, even though your still unsure what to make of it all :p 



So many amazing moments in life and that is just a few I could name off the top of my head <3 There's so many more beautiful moments to come,I'm sure of it. So many more people I will encounter who will share a beautiful moment with me. 

That moment when I get the call about a kidney will be one the most beautiful, And its in my future somewhere. 

So to all of you with heavy feet and tired spirits, think of the beautiful moments in life.Let that be your strength, that you too have many beautiful moments ahead. <3

Turn Around

       So its been about two months now that my blood pressure  has been at a normal range. Things are looking pretty good,well in terms of that situation........still have the problem of no kidney yet, and still on four days a week of dialysis. But things could be worse.......... God has some plan, but Im really not sure what it is, and I dont know why he does such things to people sometimes.
           I was at McDonalds the other morning picking up some breakfast after dialysis and this homeless man stops me, he noticed my chest cath. He asked if I was on dialysis, I was a little uneasy, a random homeless person asking such information. I replied with a quick "yes" he tells me hes on dialysis too and that he has a chest cath. "Sucks doesn't it?" I was a little in shock at finding a random person with the same situation, non the less a homeless person. "Yes it does suck, I guess thats how life goes sometimes eh?" " Ya, God Bless" he replied and we went on our ways. 
Just goes to show someone could always have it worse than you. I could never imagine being homeless and have a failing kidney. I mean how do you keep that chest cath safe from harm? Of clean and sanitary? Life always surprises me.

 Cupcake biz is up and down.  The word of mouth process takes a lil time I guess. But the people that I have done jobs for have all loved what I have done. :) I think I'm becoming immune to cupcakes lol, I used to not be able to look at them without having one, now I just taste a piece to make sure I did not somehow screw up the recipe lol. I like baking and cooking but sometimes Im not even in the mood to eat haha. I just enjoy making and creating and having other people enjoy. 

Whats for fun these days? I'v kinda lost my "Mars attacks" fun side lol. Before my marriage and this recent health situation relapse  I used to hang out with lots of local band people, being the amateur photographer, just having fun being part of something. My friends of the former band Storytold just recently had a reunion show. Finally! lol I had been dreaming of that, like alot of people haha. As always they were amazing, and as usual they made their Lil Mars Bars feel special haha. I mean they made sure that I was going to be able to make it. Everyone as usual called to make sure I would have a way to get there and Loren (the lead singer) told me he has a ticket for me, haha sadly he told me to late cause I had already bought one, I was not going to miss that show. Anyway so I made the show obviously, even with me being a lil scared to be in the crowd of people with my chest cath. Heck I got up in the very front of the stage as usual, screamed my lungs out and totally had a great time, and had fellow fan friends guarding to make sure I would get bumped by some other crazy person haha. That was the most fun I had a long time since this relapse. 
           
                So I know I have not written in a really long time. Times gotten away from me, with having to recently move. Took forever to find a place that was not a scam. Plus there really has not been anything to say. I mean how many people want to hear about me going to Starbucks and dialysis over and over? haha Thankfully my health has not worsen so I have had nothing to report. As long as I stay positive and stay within my liquid restrictions and watch my diet I think I'll be okay for the time being. Lots of people have more problems because they do not follow the doctors orders. I look at people at dialysis and somehow they are in worse condition than what I saw them in a year ago. I guess people give up hope and just give in to temptations. 
I just keep telling myself its all for a reason and its all gonna get better. 

Just gotta rock on and be my crazy lil beautiful bubbly self :P 

Finally Feeling

Finally feel myself again, after that last ordeal in the hospital. I was feeling really messed up, not sure if it was just from being in the hospital, or from all the IV medications. Especially that nitro drip, Id never had nitro before and that was the only new medication I was given. So I think maybe the nitro had something to do with why I was still not totally feeling myself. 
I just had been nausea and vomiting the last few days after I got out the hospital.My appetite also was not what it usually is, I mean usually I can eat portions for four people lol, but I had barely been eating enough for one person. BUT this last week I'm finally feeling back to my regular me, no more vomiting or nausea. Well no more constant vomiting, I know gross, TMI but hey its part of whats going on.
Anywho, so back to my old self, still no word on a donor match. But good thing is since my last blood pressure ordeal in the hospital, my pressures have been EXCELLENT at home. I don't know what they did that fixed it but something worked. 
Nothing much else to report here, just hanging around at home as usual. Working on getting my foot in the door at that culinary school. Still doing four days a week dialysis...urg............

"Vacation Stanford"

So I was in the hospital this past week, was quite a rough adventure. SO I went in because my blood pressure was like 222/130 on top of having stabbing stomach pains, so bad that mom an dad were in route to the ER but it go so bad they pulled over in a 7-11 parking lot and called 911, mind you its already midnight on the 4th of July by now. Ambulance ride was bumpy and my stomach pain was now spreading to my back. The paramedic said she could give me paid med in an IV....well she attempted TWICE to stick me and couldn't get it.I told her to just stop trying, I did not know what was worse by then needle stabbing or horrible constant stomach pains.At the ER the doctors were puzzled. What could make my blood pressure so high? when I am already on 5 medications, and they tried giving me IV blood pressure meds and no reaction in a 24 hr period. Finally got moved up to a regular bed upstairs. About 6am as my parents leave to get a lil shut eye I started puking unstop ably for atleast 4 hours. Urg by the time my parents come back like 6 hours later the puking seemed to slow down, but then there was my room mate causin more disturbance, seriously the worse room mate anyone could have, she even annoyed the nurses to the point where they gave me ear plugs and said "we are trying to find you another bed". I got settled in my new room, but my blood pressure was still not where it should be. So the doctors ordered a Nitroglycerin drip, then I developed a bad reaction to that, got the chills like out of control chils, feeling unbearable hot then cold to no end. My body was shaking so much it looked like i was being electrocuted. They gave me something to sleep and I knocked out for a bit.On top of that I had an IV in each arm. Even though the Nitro was horriable it seemed to do the trick on the bp now they just had to watch for a few days and do dialysis in hospital tomake sure it really did the trick. the rest of the time i was just over tired and afraid to eat anything. but i think with the help of reorganizing my meds it looks like it uncontrol now. urg Im so tired now.but better.O! and one the head kidney docs who I already didnt like, I hate even more. SO he came into to do a final check and starts givining me a lecture about "maybe you remember how sick you felt and that maybe now youll take your medication." WTF! I was so in shock i was speechless. Seriously dude you think Im making this happen on purpose. I take all my meds and even extra some times, I pop it like candy! omg



Yea so thats my latest adventure.....Iv been home now about three days,but I am still not feeling myself. My appetite is not what it usually is, and I am just fatigued. It will just take time to get back to my old self. It was a rough four days in the hospital, my body went through a lot. Although I did have a wonderful day yesterday, one of my Aunts and cousins came to visit. We had a really great day went to the park and we had a bbq in the backyard. It was really great. Being with family always makes me happy. 

"To us, family means putting your arms around each other and being there"

Sometimes

Sometimes I dont want to write because my head is filled with so many thoughts. So many things and people wont understand. I mean how many people in my life time have I met that have been through even half of what I have? ...not very many lol. People cannot begin to comprehend, my thoughts, or feelings. 
I always seem to have a constant fight going on in my head,  fighting over whether I can keep up this perky act.  Yes I am a very optimistic woman and full of positive energy and what not. But then there's a part of me is like why me? why again do I have to be my own heroin in my story? I mean I know there is some reason that this is all happening. I just wish it wasnt.I mean how much more can one person take, especially only just reaching her twenty sixth year of life.Kidney disease is really serious, I really do not think people understand how much your kidneys effect your life. Last week I had a little too many potato chips, and my potassium shot out the roof, I could have seriously dropped dead, from eating a potato chip! If I was to stop going to dialysis I would probably die withing the week. Thats how scary this is. I know I look great most the time and have a beautiful attitude, and shelter everyone from how sick I feel sometimes. So I guess people do not really realize whats really going on.  I am not sure when it will all make a turn for the better,but somewhere in the future it is there. I just gotta keep trudging on. Picking myself up when I fall. Not sure where all these pieces connect in my life to make for a better..though I do know that all these "adventures" have made me more aware of what life really means.t. It's over a year now on dialysis and waiting for a kidney. And I am grateful to be alive. I wonder though when am I going to get that wonderful call? How much longer? I still have my chest cath, docs are surprised how long its lasted, and everyone keeps pushing to take it out and put a fistula in...I have been stalling that. Im hoping that transplant it around the corner and that there is no need to mess with my chest cath if there is nothing wrong with it.That potato chip incident last week was real bad...8.5 potassium, I decided to have a few potato chips havens had any all year..well had a few and few more and few more, and next could barely walk, nurse said I could have had a heart attack, and the dietitian said I could have dropped dead right there. So pray for me and pray I find a match, and not only for me pray everyone in there dying need gets what they need. 

 Faith is being sure of what we hope for and certain of what we do not see Hebrews 11:1

the sickness

Been getttin sick alot, lots on my mind, but have not wanted to spill my guts about it all just yet. Much love and prayer to all. Sending you good thoughts, please send good thoughts back <3

5,400 people....

5,400 people are diagnosed every year with FSGS (focal segmental glomerulosclerosis) kidney disease. My brother and I were both diagnosed as we turned 13. FSGS there is no cure and they have no idea how it occurs. FSGS is very different in every case, some are diagnosed at an early age, some are able to be stable just on medications without going the route of transplant. 
In my brothers and my case we had no idea, it hit us like a wave, one day we were fine the next day I was near a stroke at  13. Doctors have not what causes FSGS and are working hard to improve treatment and find a cure for FSGS. 
Today my family and I walked a walk-a-thon with the local Nephcure chapter. Its so wonderful for people enduring similar situations to get together like that and  raise awareness and donations. 
My family walked together, sharing our story with others, our story usually shocks people because there are three of us that have had  transplant. My Aunt who donated a kidney to my brother, walked with us. The weather was so beautifully perfect for the walk. 
I did really well with walking about 2 miles, my energy was upbeat, course the minute we got home I zonked out for a cat nap :p We had a lil family BBQ after and enjoyed just being together. I really love spending time with my family it helps me cope really well with all the things I am going through. And next week we are all walking the National Kidney Foundation walk. 
Well my dialysis treatment is about over, so Ill bid you adieu. <3

92,488

As of today there are 92,488 people in the United States waiting for a kidney. Can you believe that?! Think about all the people who have two perfectly good kidneys, and you only need one to live.

the blood being cleaned 

 Iv been on dialysis a year now, and Iv talked to many others in the same situation.. dialysis...but theres one things that's different, most of them have decided to stay on dialysis for life rather than try for a transplant....Scared of transplant. Somehow they have a gruesome picture of transplant process. Not only is the surgery tolerable, its means so much more. It means no more fluid or diet restrictions.Means not having to spend hours of your life on a machine, and having more health issues. I'm not saying everyone is like that choosing dialysis for life over transplant, but there are that handful. 
As for being an organ donor, its one those things that if I could i would do it in a heartbeat. If more people were organ donors the waiting lists wouldn't be so long. My father, brother and I all had living family donors.
Anyway enough of my ramble about organ donation, but do give it a thought :p. 


      As for my progress, well dialysis is doing well, I think we finally figured out for sure my limit as to how much fluid we can pull off in one treatment. Iv had to decrease my fluid intake again because I am not peeing as much, and the more fluid that stays in me causes more problems. I am not like most of the other on dialysis, I am very petite and I mean very lol, so every lil once effects me unlike most people who can go kilos over in fluid. Believe me I know I cant. A few weeks ago I over drank by 2 kilos and they tried to pull it all off but I ended up puking not stop until they gave me a nausea medication that made me feel like I was now intoxicated lol. Urg I will never over-drink fluids again....course thats easy to say, and I really do try to stay on task with watching my fluids but sometimes, I just really want that extra glass of iced tea. Im doing good though, always a lil over but never like that one horrible time. 
Went to UCSF yesterday for a full transplant evaluation.Just have to wait to hear back from the doctors on what the next step is. Other than that nothing else to report, blood pressure is still not under control.


O! I am doing two 3 mile walk a thons in weekends to come :) very exciting. They are both for kidney disease, plus it helps me stay in shape, AND show people that just because I am on dialysis doesn't mean I can not be fit and energetic. 
SO I think I caught up on all thats happeneing. I really will start writing again on a every other day basis.<3

Bad at This

Wow, I have been getting really bad at keeping up with my blog :p Iv been in and out of the hospital with major blood pressure issues. A few weeks ago it was like 222/140, even after taking all five of my blood pressure medications. Dialysis has been rough, the doctor is has changed my fluid goal on dialysis, and added more medications. Things are going so slowly, its already been a year now that I have been sick, I cant even believe that. I have so much to say for updates,but Ill have to wait until tonight, because my energy is not the greatest during the day until about 3oclock. I hope all is well, and that everyone is enjoying the sunshine :)

Ups and Downs

 Time flies, when life is just passing you by and your still in the same place. Heavy feet and heavy eyes. I wake up sometines and even though I'm happy and thankful to be alive, I still think what is this all worth. Just repetitive day after day.
With that said Easter was wonderful had some family come spend the day it was really great.Just what I needed. Togetherness<3  We even did a "big kid" Easter egg hunt :p 
Also Im working on finally following my dreams and going to Culinary School :) Cooking is one of my passions. I love to cook for anyone and make them smile. Thats how I show my love tee hee. Luckily there's a awesome culinary school bout 15 min from my home. I was hesitant to wait and enroll after transplant. But waiting for transplant looks like a longer wait than I thought. SO Im thinking of attempting to go to school, hopefully I can do it, even with all my sickness and fatigue somedays, and dialysis. 
Also the doctors said they wouldn't let my Aunt be my donor......hence the wait longer. They said something with one the tests showed that she she would not be a suitable candidate....so we are going to go to another hospital and get a second opinion. Life has twists and turns, I am not sure what will happen next. But I know something good will happen, everything happens for a reason. Even if it looks hopeless. When I heard the news I just got this big lump in my stomach, the docs has acting like this was it, then suddenly it was like ROADBLOCK. 
Dialysis is going pretty well, have not gotten sick in along time during treatment. 
Sleeping has become a new-sense again, the sleeping pill I am on seems to have no effect on me anymore. Other than that just hanging at home with the dogs, baking and cookin, taking the dogs to the dog park. And now that the weather is warm and sunny, I started pulling weeds to get a nice garden in place.
Just pray that I get a donor soon. Much love to all <3

how time gets away

Sorry for not writing. Its been a wave of things going on. On top of its been just a time where I have alot to say, but at the same time. I dont feel like talkin. So many questions, and no answers. I'll fill everyone in probably tomorrow, or later tonight. 

Donate Life-Blessed-Waiting

Well I ended up getting the cold everyone had. Doing much better now, cold symptom wise, lil sniffles. Kidney wise still waiting waiting waiting! The docs are still doing more tests on my aunt,she was here again this last week for more timed blood test. Now more waiting. She and I are both anxious  :p Did you know that 113,786 people are waiting for some sort of transplant? Today I went to a Donate Life Meeting. I am really involved with different kidney organizations, and organ donor awareness organizations. I just really want to get the word out. Organ donation has been a big part of my life and my families life. WIthout organ donors my brother and father and I  might not be here .We were all blessed to have a familiy member donate. 

Lysol, Hand Santizer and

 Everyone in my house is sick right now, except me. With three transplants in the house and all on immunosuppressed medication germs are easier to catch. I really hope to avoid catching the families cold. 
We have to be extra careful about germs, because we catch them extra fast and it seems to be double the cold that everyone else had. 
So cross your fingers that I do not catch this cold :P I especially do not need a cold being on dialysis and everything else that my body is going through.