Wow, Life gets busy!!!

Tonight I told myself that I would go to bed as soon as the kids did b/c I have had an emotional and hard long day! Where am I now? Not there. Today I actually cried for someone I didn't know and I don't know if I can say I have done that before? They didn't see me, it wasn't right away, it was later, on my way home when I have no doubt in my heart the Lord knew what was weighing on my heart and mind and a song came on, and it spoke right to me. I have that happen SOOO many times!!! Tonight: Jeremy Camp, there will be a day, of no more tears, no more pain, no more fear.....Work was chaos and to top it, a mother of 3 teenage boys just found out that she has cancer, not a cancer that can be attacked, cancer that has already sabotaged her body and invaded every single organ and bone in her body with little to NO warning that it was in there, growing, spreading like wild fire....She has days, maybe months. Can you imagine? There are patients that are optimistic then there are patients that just don't have a chance and I can see that poison living inside killing them, eating away.....WHY? I have to be honest that this is the biggest area of my faith that I struggle with the most. It doesn't seem fair, why can some people that are evil live to 100? Why so young?
I did this with my own health too, but I know why now, I didn't at the time I was going through it and it was the worst time in my entire life, I thought I was JOB in the bible and didn't know how I was going to get through it, ONE thing after another, many people don't understand how low I was, how fearful of death, so sick, death was knocking on my door!! But what about this mom, she won't be alive later to look back and see why, she doesn't have a chance to have it change her life forever b/c she will be gone!
If I could die today and go live with the Lord would I say, take me Lord with open arms? I have to admit that I can't......That alone that I say that to the Lord makes me feel ashamed and sad b/c why? I SHOULD want to be with him today. It sure would beat the world and day in which we live!!! People are so mean, friends have turned their backs, women (I thought this would change the older I got too but that was a delusion) why can't they all just be happy for each other and support one another with love and friendship. Why jealousy? Why are we envious and why can't we be proud when their kids are better than ours? Why can't women say, she sure is beautiful, and not think, man she must be a bitch. When someone is crafty, why can't we say, you are so talented and creative what a gift, instead of thinking and rolling our eyes, there she goes again! I have to be honest, I have been hurt by soooo many people in my life and I just don't understand why? You know what? NO one in this world could give a shit and I am just beginning to realize that. No one cares. No one cares what kind of house you live in, what you drive, who you know, where you have been....ALL THAT MATTERS IN YOUR HEART WITH THE LORD. I have to Lord in my heart and I don't know what I would do without him. He is my everything and I do want to live with him. I wouldn't even know what I was missing nor would I care. The one thing obviously that keeps me here....My husband and my kids. I want and pray that I am here for them through their phases of life, to cheer them on, to support them, teach them, hold them, love them, be excited with them....Children are amazing and truly a gift from God.
I'll be honest, I don't spend as much time with my kids as I should, but I know it and I hate it. I love them more than anything and it is my prayer to be a better mom....I don't want to look back and say "why didn't I do more with them?" I don't want to be dead and have them wonder why mom needed a clean house, or sat on the computer, cleaned, did things that she shouldn't even care about!!! (Ok, I am not that bad and am probably being hard on myself b/c I DO alot with my kids) but I constantly remind myself of it. Because like I said before, No one gives a shit. I love my kids, they are so beautiful, I could lay in bed for hours staring at their little faces, smelling their blankies, just watching them....They are amazing, I cry b/c I can't have more! But, the Lord gave me 2 little miracles and I am going to try to be the best mom I can, mistakes in all!

SUMMER'S END

It is hard to believe that its done! This summer went by sooo fast and it just makes me so sad. One of the best summers I have ever had. I enjoyed every moment with my kids, I hardly worked, enjoyed life to its fullest! I headed to Detroit over labor day to see my sister Angie and the boys, just me and the kids, it was great! We had so much fun visiting nature trails, parks, Lake St.Clair, flea markets, the zoo....Mom even got some speed shopping done at the outlet mall on the way in howell. The kids were awesome! They are such good kids....Honestly, I don't know what I would do or where I would be without them. They are my life and my everything. Karlie is getting so old!! She is so mature in her thinking and actions, her big milestones this summer were learning to swim all by herself! NO SWIMMIES! She is a great swimmer, I was shocked to come home from work one day to her telling me she could swim. I didn't believe it until I saw it with my own eyes, we even had to go back to grandmas THAT night so she could show me. She learned how to ride her bike with NO training wheels! She is big stuff and so sweet, she loves her brother so much and is always taking good care of him. Luke, he copies EVERYTHING you say with excitement and enthusiasm in his voice. Today?!!! Tomorrow?!! Everything you say, he says it back but with such a high excitement! He is hilarious and makes me laugh all the time. REFUSES to be potty trained. Sleeping in his big boy bed was a big thing for him.

Karlie started preschool this week. I am actually doing very well with it. I think its b/c I am so happy and excited for her! She is just going to love it and she is sooo ready. She is going to grow and learn so much and make friends, she is sooo happy. She said goodbye to dad this morning with no delay. I have to work every Monday and Wednesday and she goes Mon, Wed, Friday. I was kinda sad about that b/c I can't take her and pick her up, but like one mom told me, this way I get to be with her all day and have my days off with her too! May as well be at work if she's at school....I still want to be the one doing it. BUT thank the Lord for dads job b/c he can go in late and he gets to bring her each day so that is really special for them too. so much Fun! I am really looking forward to seeing her grow and being there with her through school, I just pray we made the right decision picking HCS.....I pray she never has to go through some of the things I had too....I can only do my best and be the best parent I can be to her and the Lord will take care of the rest!

Metro Cruise 5K FIRST PLACE!!

Before I ran this race I wanted to have a shirt made that said this: "ALL that matters in life is CHRIST". Pastor Don spoke that to me a few weeks ago and it is all I think about lately b/c its true, and if we don't constantly think about that, its easy to let the "little" stuff of life take priority. Who cares about your clean house? Who cares about your clothes, vehicles, home, all these so called "items" that "make" people happy. Do they really think that those things are going to make them happy? Ya right! Thank the LORD that I know Him, and have HIM in my life b/c in the end....none of that other stuff matters but HIM. I just thought, what a perfect quote to have on my running shirts....B/c it doesn't matter how fast I run, how I place, if I place....Who cares? I do it b/c I owe him the glory and because I am alive today b/c of him. I have life, I am a healthy woman, wife, mom! I ran, and I finished, first!!!!!!!!!

Can you believe it? I sure can't!! I was sooo overwhelmed with emotions that all I could do was cry. ME? this just can't be happening to me? It was awesome! It was an amazing journey of life, a happy and joyous day of celebration of how far I have come!!! I am just so geeked, so proud of myself. I can do this! I really can run? I felt the Lords hand with me the whole time, he speaks to me through running and when I run, I feel this closeness with him. When I was done I know that he was wrapping his arms around me saying "good job Lisa!" I cannot describe how empowering and how full of strength it makes me feel when I finish. I am strong now, my body is strong, inside and out and it makes me feel sooooooo happy!!!!!

Summers Ending??? So soon???

We have had one of the best summers in my entire life! My kids are at a great age and maybe its b/c I savor every moment and realize that life is going to be gone before we know it or at any time. I have had a BLAST with my kids this year!!!
Karlie is so beautiful, growing up so much, she is starting to push mom away alittle more every day b/c she's "too cool" for mom. Breaks my heart.
Luke, he is my stud and I just can't get enough of him. He is at that great age where he is funny, and just so cute! I never thought the 2's were bad, for me, it hits when they turn 3. So far, he is just awesome. I love them both sooooo much, I honestly don't know what I would do without them. I love being a mom and pray that I am here to do the job for a very very long time!!

PRAISE THE LORD!!! FIRST 5K!!!

Today I am just so overwhelmed with emotion....I ran my first 5k. I was sooo nervous and have been putting it off forever, self doubt, fear, the unknown...I don't know why, just me.
I told the Lord that I wanted to do one for him. I didn't care how I finished, I just wanted to praise and bring glory to God for all he has done for me. A honor to Him for my life. I almost could have died last year.....I was told, absolutely NO more kids, No more running/ anything physically active. My heart was so heavy just a year ago....I was again, filled with fear, fear that I was going to die and leave behind my family. I didn't care about the running or activitiy, shoot wouldn't everyone want to be told they had to do nothing? :) No one knew what to do with me medically, I was an "unknown, medical mystery". Something I did NOT enjoy being. But, then it all went away.....By the grace of God, I am for the most part, a healthy 33 year old woman/mom/wife/sister/daughter. I live on Lovenox injections and that keeps me alive.
So today I ran. I ran as hard as I could and let me tell you....I thought I was going to die! For the past 3 weeks I have been sick with bronchitis. I signed up for my race and got sick the day after....Great! I sucked it up and kept running, but I never thought I was going to make it. The last mile, I just looked in the sky and prayed, "please Lord, fill me with your strength and help me finish this, I can do this and I want to do this for you, I cannot finish without you."
I finished.
I watched the awards handed out and then I heard: Lisa Jongsma!
What?
I finished 2nd! I got a medal for 2nd place out of 70 women my age!!! I finished 182nd out of 949 participants!! Did I just do this????????
I was so overwhelmed, so shocked, still am. To God be the Glory!
I got home and just bawled. Why? B/c HE helped me win. He filled me with strength and I know HE held my hand and he is celebrating with me! My Lord is so amazing and so wonderful, I never want to forget all that he has done for me. I want to live each and every day in remembrance of where I was last year, where I am today, and how the Lord held my hand each and every step!!! I wish everyone knew Him, and could see how truly blessed we are. HE did it! Thank you so much Lord, I can never say it enough. I praise and thank you for everything, THANK YOU for helping run in this race of life!!!

Karlie and Luke camping at Holland 2010

Day at the Zoo

Tulip time 2010

Been a long time!

Wow, where does the time go? For a few months we tried to sell our home by owner, we had a ton of showings, but no one could get approved....Guess it shows how bad our economy really is right now. We have been really busy. Moms health has been great! (well, except for this week but thats only b/c of a really bad cold!) Praise the Lord for health, you never realize how much it means until your set back....and trust me, its hard to see the light at the end of the tunnel when you don't feel good.

We went to Angies in June to celebrate Devons birthday for 3 days. We had a great time as a family, got a hotel with a pool, the kids had a blast. We went camping to Holland again for a week, everyone but dad got the flu for at least 2 days....Puking in a trailer is not fun. We still got to enjoy about 1/2 of the week ;) We've been to the zoo, millineum park, lamar park, and enjoyed the 4th of July in Grandville (always a tradition).

The kids are amazing and I just love being a mom. I get a set schedule in the fall, which will be nice, just 2 days a week. The perfect balance for this mom! I love my job and I love being a mom and wife too. Luke is talking like crazy, repeating everything, I absolutely LOVE the 2's!!! He is so funny! Karlie just started swimming alone, even underwater! She is so proud of herself and so are we! We swim all the time at mom and dads neighbors, at least once a week we spend the day by the pool.

Today our house goes up for sale by a realtor....Not sure how I feel about this whole selling business! It is stressful and I am not giving my house away like they would like us too. Its so sad to see us losing 20k already that we have put into it, but hey, I guess that is the economy and life so theirs nothing we can do about it. If we don't sell, we stay. Really we don't have to leave so praise the Lord for that one! Like the realtor said, we could have bought 7 years ago when we got married in a worse neighborhood and lost even more and been stuck in that place, then what we do? We got a nice house (shoot, its the best its ever looked!! New carpet/wood flooring/clean/ painted,) I love "most" of my neighbors :) and the location, although a busy road, is so convenient. The Lord only knows and I am so thankful that I don't get to decide. I put our lives in his hands b/c he knows best!

Better go for now, kids and I are staying in b/c mom is sick....They are probably bored but someday they will understand. Posting a few of my fav. pics so far this year....till next time. I promise it will be more frequent! :)

8TH AVE SW. GRANDVILLE HOME

Do my children hate me?

Do you ever feel like your children dislike you? That is how I have been feeling lately, and maybe its because I am home with them all the time or maybe its a "mom" thing, but lately all my kids want is DAD. Even now my 2 year old son asks if Dad can put him to bed, I am the one that has always done it. Now he cries for daddy, and in the morning, he is still crying for daddy. He gets so sad if he doesn't see dad in the morning. Everytime we hear a noise, he thinks its daddy coming home and gets all excited. I was hoping that maybe my son would be a momma's boy but he definitely is NOT. Karlie, she never wants mom to put her to bed. She will wait forever before falling asleep, if I tell her that daddy will come to say goodnight. WHY???? What am I doing wrong? Am I that mean of a mom? I don't feel like I yell all the time, I know that my voice may sound like it, (my mom always tells me that! and I know its true) but honestly I am not upset or mad, It one of the things I hate the most about myself: my TONE....I need to pray harder about it! ;)

I would do anything for my kids! I take them to McDonalds to play, VIP pets to visit animals, were going to Nemo on Ice just the 3 of us, I get them icecream or slushies b/c its their favorite, I take them camping all the time by myself, I take them on bikerides, to parks....The list could go on forever!!!! I play games, even play "underwater fishy" in the bathtub with Karlie b/c she loves to do it with mom. Why do my kids go from fine to absolutely crazy and dramatic the second dad comes home. Even when I was in the hospital and would miss them so much for days, I would walk in the door and they would go runnning right past me to dad. Makes me cry. Is it b/c I am a mom, a part time working mom and home with them alot? Can I fix it? Maybe the other moms feel that way too and I am just normal. Whatever the case, I hope someday they will appreciate and love me and thank me for all the love I continue to pour on them even when they don't love me back.....Being a mom can be so hard sometimes!! :)

Outta here!

Steve and I are about to leave for the dominican for a vacation and I just had to write today. First of all, I want to tell my children that I love them more than anything on this earth. I thank the Lord for blessing my life with them, the ability to have them, and treasure the days that I have with them. They are so precious and I cannot imagine living life without them. They bring meaning to my life and make me a better person. Kids are amazing and I love each and every stage of their little lives. I wish I could freeze time and keep them little just alittle longer....

I am so thankful to my family, for all that they have done for me, not only over the past year, but always. Mom and Dad, I don't know what I would do without you. I didn't understand the love that you have for me until I became a mother myself. The love that you have for your kids is undescribable and something you cannot comprehend unless you are a parent. Now I know and appreciate all that my parents have done. This year I relied on them alot, not that I wanted too, I felt bad about needing them so much but this year was unforseen with all the events, sorry Mom and Dad!!!! You have no idea how much it meant to me.

I am sooooo happy and still just in amazement that I look so good inside....It is a miracle. I will continue to pray about my health b/c we all really have no clue how thankful we should be about it. We could all be gone at any moment. You would think that I would understand that more from working at my job, scanning cancer patients, paralyzed patients, car accident patients, falls with huge brain bleeds, little babies that never had a chance to experience life past a few months....I have seen a TON, but it never really hit home until it happened to me. Mine was minor when I compare myself to all of those, but none the less, each day is a gift.

I pray that I live differently. It was a wake up call to Lisa. Makes me think of the song I sang as a little girl, "this is the day, this is the day that the Lord has made, we will rejoice and be glad in it". It is my prayer that I wake each morning with a joyful heart, look to the positive of all situations, and remember that life is but a second in comparion to my life spent with Him in eternity.

I'VE SEEN MIRACLES HAPPEN

I cannot explain the huge relief in my heart today. I am amazed at what has happened and it can only be due to 2 things: The Lord and Lovenox (a different kind of blood thinner that I recently got switched too.) There is a new song out by Kutless: I've seen miracles that happen, silent prayers get answered, broken hearts become brand new, thats what FAITH can do. I LOVE that song. It is my favorite song and I listen to it almost every single day as a reminder to myself of the Lords faithfulness and love, and to keep believing in HIM and that miracles and prayers do get answered. They may not and will not always be answered the way that I want them to be, but that doesn't mean they are not answered. Its just all in HIS control and HIS plan, not mine. Sometimes its hard for me to have that kind of faith, to give HIM the control and sit back and let him do the work and the plan that he has for my life. It something that I long in my heart to improve on and I know I will. Too much has happened in my life that I can't turn my back on, and look to realize that it truly was HIM and that He was with me all the time. He has blessed my life in so many ways, I truly owe him all that I am and have. Isn't that what we were made for? To bring glory to Him and be thankful for his amazing love.

I, for the moment have NO signs of veins in my esophagus, I had veins that have reopened that were just recently full of clots, and today I am feeling GOOOOOOD. :) All the procedures that were going to be done at U of M were cancelled, I don't have to be scoped again for 4 months because my esophagus looked so good, and it is amazing. My Gastro, whom I love, Dr. Serini, couldn't believe what happened. He thought I went to U of M and had a recannalization done on my veins and was wondering what I was doing there on Friday. He just shook his head in amazement. As soon as he scoped me and saw how beautiful everything looked, he called my new primary and my liver surgeon at U of M to tell him the news. I am just so happy. It has been an amazing, crazy, scary, emotional rollercoaster of a ride, and one that I hope and pray is behind me. Yes, I will always have this "disease" but for now it is being managed and for that I say Praise the Lord. Its like being a diabetic and having to inject insulin twice daily. Yes, it does suck and it hurts, but you get used to it and when you look at what it could be...I've been through alot of stuff already in this life of mine, really hard stuff, its pretty minor and I will do it with no complaints.

This all is in HIS hands and in HIS control and I will be reminded of his faithfulness and goodness to me, everytime I think of what has happened....IT will always be this little reminder in my head. Life could be so much worse for all of us, we have soooooooo much to be thankful for, and yet so many of us feel sorry for ourselves and complain. Rejoice! He is good, and He loves us. That alone is worth celebrating.

I tell you what....I leave Wednesday for the Dominican with my husband Steve....We have rejoiced and will continue to rejoice forever. I cannot wait for this vacation that finally we get to go on! (it was cancelled last year due to my hospitalizations) We are so excited. Thank you Lord for your amazing love you have shown to me!

The Lord has His Hand in it ALL

I don't know about you, but I am ready for winter to be over. I do NOT like, enjoy, anything about winter. Someday it is my dream to be one of those "folks" that get to live in the warmth for the winter, part time.

I had great news this week and that all procedures planned at U of M are canceled. The physicians agreed with the results of my most recent CT and that most of my veins are now open again, and for the time, nothing to do interventionally. Unless I start bleeding or get ascites (free abdominal fluid) again. So what? We're just going to wait until that happens? Go live a normal life and lets just see how you do? Are we going to be checking to see if they come back? No one says. My radiologist said "DON'T go off anticoagulation!" My liver surgeon left his last email with: "you keep us guessing...." What does that mean?

So, this is good news. I am definitely happy to not be back at U of M right now. But at the same time I am filled with mixed emotions. I feel scared that I am a ticking time bomb. I feel like I don't have anyone in charge, whats the next step, what about followups?

I am in the middle of getting a new primary care physician, I need a good one, but no one has experience with what it is I have! What do I have??? I still remember the day about 1 1/2 years ago sitting in his office, crying to him b/c I told him there has got to be something wrong with me! His reply: "I know but I just think this is your year to have alot of difficulties". Granted, how could he have known what was going on inside of my body at that time, but we were about to find out! Not even 2 months after that, I landed myself in the hospital with all that has developed now over the past year.... I have to call the office alot, and trust me, I don't want too, but they are sooo rude, mean, fail to send out referrals, and never let me talk to a nurse, I'm just sick of it.... I need someone that knows what is actually going on with me.

I also am finding a new hematologist b/c my insurance will not let me return to the hematologist at U of M. I will go to my gastroenterologist on the 28th to have a look at the veins in my throat. If they are gone, I can return to exercising and living normal I guess.(don't worry Mom! I realize I can NEVER run again and I promise I won't. Trust me, I can't, or it could kill me, literally.) IF they are gone, I think we will be ok. For how long? No one knows. As long as I never go off my blood thinners, I may not ever have another occurrence again.

I could have died this past year. I have a serious disease that I will live with forever, that could honestly take my life at any time without any warning. No one knows why or what it is, my surgeon gives it the name "messenteric-venous occlusive disease." I make clots, these clots have caused alot of problems inside this body of mine. Its like living with cancer but its not active at the time...I look fine on the outside, I don't feel sick now, but inside, my body is a intricate maze.....The Lord has made our bodies absolutely mind boggling! Like my gastro said the first time he saw my veins "if you don't have something done, you will hemorrhage within a year". Steve and I cried all the way home. Granted, I still could die at any moment, but this life is not all there is....Did I truly live that way before all of this? I can honestly admit No. Nothing happens in this world, or to me, without the will of the Lord. Sometimes I struggle with Why? Why would God want this to happen to me? Why does He want me to have so much hurt? I know why. It was to grab ahold of Lisa, wake her eyes to the beautiful life she has, the amazing family she has, and to begin living forever grateful.....To serve the Lord with all her heart. This life is going to be over at anytime, its already going before my eyes! but my heart is with the Lord. This is honestly, probably the best thing that has ever happened to me. Through my pain, struggles and suffering, Thank you LORD! I love You!

GOD IS BIGGER THAN YOUR PROBLEM

Have you ever been to church and had a sermon speak to you in such an amazing way that you would swear it was the Lord speaking right to you??? This was the day for me. I arrived and it was a guest pastor. "oh great". (You know that is what you think, and I am so disappointed with myself for thinking that way, its just not the same without pastor Don!) But this time I was proven wrong, just like many times before.

The message "God is bigger than your problem". We all have them. That makes us normal right? I am sure glad to know that with all my problems that it actually makes me normal for once! :)

Whether it be a cheating spouse, addiction, relationship conflicts, family, kids, or your health, we all have something we are dealing with. I think if we say we don't, we are only lying to ourselves. We are not perfect and I am so glad that we aren't. Because that is what makes us all family and we should actually love each other more b/c of all our wacky problems and be there for each other! We should be able to cry on each others shoulders and support one another, what is your pain is mine. God calls us to LOVE. But instead we all want to act like we have it all together, and pretend that we don't have issues. Some out there sure can pull that off. They look good on the outside, they look perfect, but I know they aren't. I am not saying this to sound proud, but that is what sinful nature has given us, problems.

This message was so great, I am just going to leave the 5 points to save for myself b/c this is something I want to cheerish and keep. Obviously for me, it spoke to me the most about my health staring me currently right in the eye. My fear of the uncertain, my blood clots, this wierd disease that has come upon me. But I can use it for so many other things as well.

1.FACE YOUR PROBLEM- don't hide it, pretend it doesn't exist. Look at it head on.
2.BRING IT TO THE LORD IN PRAYER- constantly, never give up on the power of prayer!
3.RELY ON GODS PROMISES- my favorite one is Phil 4:13 "I can do all things through Christ who stregthens me."
4.PRAISE GOD ALWAYS -I sometimes fail to do this one b/c I am feeling sorry for myself, and wonder why me? Instead of looking at all the blessings he has given me, I look at the things I don't want, the parts of me that aren't perfect, or the things I don't have, or feel depressed for struggling with my problems. I can ALWAYS find something to praise Him for, I just need to focus on that.
5.GOD WILL GIVE YOU PEACE

God is with me. He is holding my hand and he cries with me when I am sad. But he will never give up on me. My life is in his hands. That my friends is Peace!

our new DIRT BIKING CHICK!

Make a Smilebox scrapbook

MAJOR REVELATION! 1-7-2010

Oh my word, I don't even know where to start today. Should I be joyfull, exstatic, or angry??? Let me explain what has unravelled the past few days.

On Monday I went to work. I work in CT as most everyone knows. I wanted to scan myself to see how bad and severe my clots indeed were as the Radiologist had said leaving us the week before at U of M. So, I called my primary to get a "real" CT ordered b/c I needed to inject myself. I had it done and low and behold, it shows my Portal Vein wide open! The CT actually looks almost the same as it did last month. What? So I ran down to Ultrasound and had my friends scan me there just to confirm the flow and open Portal Veins. A radiologist came in too to confirm that yes, indeed everything looked great!

Do you know what this means????!!!!! I am scheduled to have those "clots" taken out on the 21st at U of M. They told me that my Portal Vein was so bad that I needed to get them out ASAP. I have been filled with Fear, worry, anxiety, sleepless nights, torment and lost at the knowledge to know what to do b/c I was given so many conflicting options. I cancelled the banding of my veins in my esophagus b/c the Radiologist told me he would take care of them from the inside during the procedure. I have been on the phone with soooooo many physicians this week trying to make sense of this all. Before this even happened!

Now...I called my friend Dr. Knox an interventional radiologist that I work with at Holland, he also did my first liver biopsy,at home last night. Told him what had been going on b/c the last I left him with, he thought I was getting a TIPS shunt. He told me that there is NO way I was that clotted a week ago and completely open now. Granted I am on 2 shots of blood thinners a day, but there is NO way they could help that much. Get that CD(the venogram they did during my 2nd biopsy there at u of m, this is a test in which shows the clots if there) and my team will go over the CT done on Monday and the Venogram with you and we will see what actually is going on and what we think. Do NOT have a recannalization (scheduled on the 21st at u of m) if your CT looks like it did when I looked at your last one with you did. (it does).

So, what does this mean?????
1. I had a complete miracle. Which I am not at all denying the amazing ability of my great Lord to do, and all the prayers being sent up on my behalf, I do believe Miracles still happen daily.
2. They were looking at my collaterals??? (yes these are still clotted, these are accessory veins that took over when my portal vein was clotted, but they are no longer needed b/c my portal vein is open so really we don't care if they are. They probably have been for a long time)
3. I probably wont need anything done on the 21st.
4. This is all great news!!!!! Praise the Lord and praise the Lord that I work in the medical field and take the steps he tells me in my heart to do, like giving myself a CT!!!! All the Dr's I work with to give me all their opinions, all my friends at work to scan me and help me! All my friends in the fileroom to call around to Hospitals to get my reports, CD's sent....Thank you Lord for my job!!!!!!!!

I immediately emailed my surgeon at U of M to tell him what I had discovered. He didn't say a whole lot except that it was good news. "Get me that CD of that CT" so it should be arriving there today. "I will show it to Dasika(the U of M rad that does all my procedures)" Then "we can always come up with some other unnecessary procedure to do on you." (haha) I told him that was NOT funny. Do you honestly think Mike (my surgeon, he is my age and he wants to be called that) that in ONE week the anticoagulants could have done this? "its possible" he said. NO way! No one else agrees.

So, I obviously am filled with Joy and yet, what the heck is going on! I am beginning to be filled with doubt even more and every little step my physicans say or do! This is crazy! Do you know what I have gone through emotionally the last week thinking that I am about to die and that I am so filled with blood clots again? Every physician wanting to do a different thing about it?!!!! Talk about STRESS!! No wonder I gained 30pds! (just kidding:) But I have been eating like a crazy nut so don't be surprised if it indeed happens! :)

I will keep you posted! I am soooo anxious to hear news!!!!!!!!!!!!!!!!!!!!!!

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LIVING BY FAITH

So, I have diagnosed myself. I know that I have Budd Chiari syndrome, affecting one in 100,000. I just spoke to my cousin, who is a Dr. at the Cleveland Clinic in Ohio, and that is also the first thing he asked. No one so far has told me that I have it, but I just called 2 physicians and am awaiting their reply. The only thing doubting my mind, is why haven't they said that if it such a common disease involving blood clots, wouldn't they know that by now?

I spoke with my liver surgeon the day after getting home from U of M. He told me "lets sit back and do nothing, go on your vacation, and we will see how it goes." Then after alittle while he called me back and said to expect a call from the radiologist b/c my surgeon wants to put that shunt in, the whole original plan. My Radiologist told Steve and I that he did NOT want to put a shunt in and that after my procedure on Monday he would be seeing me before the 11th b/c he needed to get those clots outta there, like he did 6 months ago, b/c they are so bad. I also called my Gastroenterolgist and he said to do nothing. What?????

I talked to Steve and he said no way. So I called my surgeon back and asked him if he even talked to my radiologist b/c according to him, I would be back there within a week. He had NOT talked to him, he "tried". I basically started crying and told him "look, you need to figure this out. Think about me! These clots are not going to go away by themselves just like they didn't last time. We took them out! If these clots are so severe like the radiologist said, then think about the pressure they are placing on my veins in my throat, I could hemorrhage anytime, and basically am a ticking time bomb. He said I am a ticking time bomb either way. Then I said "You need to talk to my Radiologist and figure out what you guys are going to do!" His reply, I will try but he is busy, unlike me (haha he actually laughed). I told him "if he's not that busy then I will give you something to be busy about, figure out what is wrong with me and figure out what we are going to do about it!"
He then told me "well quit being so complicated." (haha again.)

I had enough that day. Sometimes you just need to be persistant I am learning b/c if I am not, I will never get anywhere. I am just a number there at U of M. I am not a person with a family, a wife, friend, mother.....
They don't care. Like Steve and I both said, you just get so sick of it, that you start becoming numb and not caring. Throw up your arms and say to yourself, Who cares? They don't, and I am starting to not either. Thank the Lord I am in the medical field myself b/c I can only imagine what would have happened to me already! I cannot imagine what people that don't have any clue have happen to them. The medical world makes mistakes, and they would have done plenty on me already if I hadn't known enough. It is soooo scary to think about and like I said, Thank God, I know enough not to just go with the flow and do whatever these Dr's say.

So what are we going to do? No one knows. No one has said. My surgeon called again and told me to expect a call from my radiologist b/c he wants to take the clots out. Great! That is what I want too. After reading up on it, and learning, I do NOT want a TIPS shunt like I was supposed to get on monday. The Dr's all have their own opinion and I see the facts behind their view, but I just don't know which one is right. THEY don't know.....

I am thinking about getting a second opinion. As for now, like my title says, I am living by faith. Scared? Not really. Nervous, worried? Not really anymore. I started not caring. Maybe that is all the prayers working on my heart. The Lord has my life in his hand, he has a plan and path for me, and ultimately HE knows what will happen. If, my time ends, I know I am going to be with Him. He has my life, He is my only strength and comfort in life, and I feel his arms around me. A peace has overcome me.....Thank you Lord.

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Dec.28, 2009 In U of M hospital

today was a very emotional day for me. Steve and I were scheduled to arrive at 7:30am, we spent the night in fear of a long drive and weather. I was "supposed" to be getting a biopsy and a shunt placed in my liver called a TIPS. We arrived and were told that the radiologist scheduled to do my procedure did NOT want to do a tips. The reason we were told on arrival is b/c it was his first day back from vacation and only my liver surgeon thought it was possible. He never really showed it to the radiologist like we had thought, and today was the first time he saw my CT follow up since the last procedure he had done.
Like he said, why put a permanent thing inside of you when your liver isn't failing. People that get these have liver failure and by by-passing my liver we only set you up for future problems. You are young, you are a mother, and I do NOT think this is the best interest for you. Do I know what is? No. We need to have a biopsy and test your pressures and see what is going on today and wait for the results of your biopsy and then we can determine what the next step will be, but only by consulting with your liver surgeon, me (the radiologist), and hematology.
So finally around 11am I went into the cathlab. They went down my jugular vein in my neck, did a biopsy and measured the internal pressures within my veins. I got out at 12:30pm.
Very very bad news he said.
From the CT one month ago, you are majorly worse and severely clotted in almost ever single vein within my liver. My Portal vein is almost completely clotted again. Right now they have no idea what to do.
So the plan:

• Wait for my liver biopsy results
• consult hematology again b/c we MUST get to the bottom of my clotting problem
• in a week I will be back here at U of M and either have a a major surgery, intense recannalization of all my veins (again, this is what we did last time, cleaning out the veins) or put a TIPS shunt in if indeed my liver is now failing b/c of all the blockage to my liver

I had a breakdown a few times throughout the day. One, b/c my family physician told me to go off my coumadin and it looks like during that time, I threw more clots, I can NEVER go off blood thinners. My PC doesn't take me or this disease serious and I feel like no one is listening except when I am here at U of M. Two, WHY is this happening!! What is wrong with me? Something MUST be wrong for me to clot like this. Like Cheryl my friend said, this is no longer the "fluke from Luke". This is VERY very serious. Not only serious but sooooo confusing and no one knows what to do!

Then go figure, I take some pain meds when I get to my room b/c my neck incision hurts so bad...Well, about 3 hours later I am dry-heaving and puking in the bathroom b/c I didn't eat with the meds and they made me sick. This ripped open my incision in my neck and I started bleeding all over. Talk about pain now! This time I am dealing with the pain and I will stay away from pain meds. I had to change rooms b/c my neighbor is so loud, talks on her cell phone and has it ringing NON stop, talks about diarrhea and runs to our bathroom every 10 minutes. I didn't ask, my Nurse actually couldn't take it anymore and decided I needed my own room. I was grateful :)

I have no idea what to think. I think about my awesome husband by my side, and my beautiful children at home. I WILL survive, I will be there for them someday 100%! I think about all my friends and family and the good Lord that holds my hand each day. Without the strength of the Lord I honestly don't know how I would make it. I think about giving up, but I can't.....Somehow, someway, this will come to an end, and I pray that it will be but a distant nightmare...

Goodnight. I am going to take some Ambien now and knock myself out for the night.

BACK TO U OF M

I have a very serious, rare and complicated health problem. I have blood clots in my veins of my abdomen. Primarily located in my liver, portal vein, and superior messenteric vein. Like my Dr at U of M says "I have a plumbing problem". These clots are causing back pressure in my veins and not allowing the blood to flow freely therefore giving me high blood pressure within these veins (Portal Hypertension). This back pressure is causing problems. The blood can't get where it wants too and quickly as it wants too so it has decided to bypass these clots and create new veins, giving me large veins in my esophagus that could hemorrhage. My Gallbladder is affected, Spleen, liver, and intestines.....

Why do I have blot clots? No one seems to know. I had colon surgery 10 years ago, there is speculation that it came from that. I could have been born with this and it not developed until now. It could have happened during one of my pregnancies. We may never know. When you have Dr's arguing about the course of action to take, and place you in the middle, they say "you decide". YA RIGHT! Very nerve wracking!

I have my hematologists working at solving the "why" factor. Why do I have blood clots??? I have my liver surgeon working at "fixing" the problem. He doesn't have a clue why or what, he just knows or thinks he can find a way to fix me. I have my Gastrointestinal Dr. working on the problems that have been created due to this situation "wrapping my varices", so that I don't hemorrhage.

Then there is the question: Stay on blood thinners or not? Some say yes, some say no. Some speculate saying -she could bleed and hemorrhage from the veins in my esophagus and this could be life threatening and almost unstoppable if she is on blood thinners.- if she's not on blood thinners she could throw more clots and essentially cut off the blood supply to my liver and everything else. Hmmm...

My husband is so good at describing all the variables and ideas, and the thinking behind it all. I told him its a good thing I have him b/c I don't even understand it all. I sit in the appointments crying and he is my ears listening and being level headed. I thank the LORD that I have somewhat of a medical intelligence from my career. If I didn't! Oh my word, I would be so lost right now!!!! Even more so than I am!!!! Its a scary world out there in the medical land. Different Dr's have different opinions, they all talk lingo about you hoping you won't understand...thinking that I have no clue what is going on. And really, I am to the point that no one really knows what to do.....

So, I put my faith and trust in the Lord that he will guide all of my Dr's to find the answers and do what is best. I can't be the only person out in this world that has this problem! Most people with this problem have liver disease or failure. I don't. Most people are little kids, I am not.

So, its on to option 2. A procedure call "TIPS." They are going to attempt to place a shunt in my vein to bypass the clots and get the blood flowing. Will this last forever? No one knows. Most people that get tips have liver failure and die before they ever have to find out if the TIPS actually could last forever, they get it to buy them time. In my case, I don't have to worry about my liver b/c it isn't in failure and we all hope that I can live a long time. So will the shunt work and how long, or will it just clot off too?? All things no one knows. But I guess it is worth the try and see how it goes. If this isn't possible then it is surgery. What kind? There isn't even a name for it. He would create a surgery for me, create a new vein system, really never done on someone else. SCARY!

I am having problems sleeping these days. My mind is just a racing. So many things to think about. If anyone out there knows ANYONE or ANY dr. that would give me a second opinion or thought, please let me know. Otherwise its back to U of M in a week or two for our 2nd attempt.