Refresh and a Birthday wish

Have you ever sat staring at your screen hitting refresh?  I feel like I have been doing that so often lately.  To my life.  Just hitting refresh every day and praying something would change.  This morning things were different. I feel like there is less weight on my shoulders.  I feel a calm in my heart.  And I feel relaxed.  I don't know what changed.  But I'm not about to sit around and wait for the other shoe to drop.  I'm going to make the most of it while it lasts.  And pray it lasts for a good while!

Today is also my little brothers Birthday!  Happy Birthday Jeff.  My birthday wish for you is that you feel the same calm as I do.  I know sometimes you feel like there is a roadblock at every corner you take in life, but I promise to always be here to help you push though them and move forward!  Remember that!  I love you!

I'm off to enjoy this blessing!  I hope you are all having a great start to the week.  Thank You for your love and support!

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Letting go of normal

Why am I so afraid of this?  Last night was day one of no night time nursing for Alex.  And after he was asleep, which took a whole 5 mins, I laid there watching him.  So many thoughts ran though my head.  I had planned on self weaning, but at 2 and a half he shows no signs on giving it up.  And before anyone throws in the whole OMG hes 2, get over it.  Our breast were made to nourish and comfort our babies!  But now that I say that, is it horrible of me to take away that comfort.  That is the only reason he nurses still.  He usually cant fall asleep without it.  I'm so torn here.  One part of me feels really guilty for taking away what he finds comfort it.  And I think about our time together, I will really miss that bond.  On the other side, Id love to be able to go to bed and not have a kid climb up my shirt in the middle of the night.  And part of me feels like hes ready to be independent.  And yes a tiny little part of me is tired of hearing all the remarks about how hes to old, or that's why hes so attached and so on.

I go back and I read this post about our journey and I wonder if I should really stop.  It was such a struggle just to get started.  Gave up halfway though, then rallied and have been nursing champs.  When I think of not nursing anymore I feel like I'm taking away the one thing I can give him right now. Comfort. I'm worried that I will get sicker and as he grows he will forget the time we spent together and will only see the sick me.  And that is something I will always worry about.  I still feel guilty letting my oldest see me sick.  But eventually there will come a time with there is no hiding it.  Maybe none of this is making sense.  Not a lot does these days. 

I know as I continue to get sicker, I will no longer be able to nurse.  I have tests that need to be done, but because of the amount of radiation, since I am breastfeeding, I am not willing to do.  I know that there will only be more medications to clear, and more procedures done and eventually more hospital time.  So do I stop now and prepare for that, or enjoy what time we have now?  I think what is holding me back the most is that in my crazy life, between the Drs and pills and needles and sickness, breastfeeding has always been the most normal and natural thing about my life for the last 2 years.  But I know it cant be forever. 

Since writing this, Alex woke up had cereal, watched a little Mickey Mouse and is now playing away.  When I changed his diaper I asked him if he wanted to nurse he said no.  I asked him if he was a big boy now and said with a smile.  "Yesh Mom!  Me big boy"  So I guess we will see how it goes.  Next stop big boy underwear!!  I know I have shared it before, but its moments like this that I will always remember.

Today is the first day of fall yall.  Have a wonderful Friday and a great weekend! 

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Liver Clinic Update

Is it wierd that I am freaking out because I dont have to go back for 5 months?  The Dr who I saw was not my favorite regular Dr.  So things were a bit different.  It seems like more and more the nurses are doing what doctors used to.  First I saw a nurse who took my vitals.  BP105/50.  Temp 99.5.  Weight....yeah not going there.  Answered a hundred and one questions.  And then came a Dr who I had never seen before.  Who had me explain my answers to the questions asked by the nurse.  Then came the dreaded exam.  He looked at my chest for any spider veins.  Checked my hands for swelling and flapping. My eyes for any yellowing.  And then my belly.  Seriously, my liver and spleen are so large and swollen that anywhere you push its going to be tender. Yes here and yes there. I thought I was going to break my toes from curling them so bad.  He said he could feel that my spleen was quite big as well.  Fun times I tell you.  Then it was off for blood work.  Only 6 vials this time, thank God!

By the time we got home, I took some med and went to bed.  Im truly grateful to have my family here.  Uncle Jeff was in charge of homework and reading.  Aunty Bug picked the boys up and fed them and gave them a bath.  Bubu supervised!  And I woke up just in time to say goodnight to Ant. Talk about a quick day.  Of course I was up till 3am and up at 6 but I am feel well rested so no complaints here!

So unless anything changes, I think besides monthly blood work and a hematologist appointment, I'm done with Drs till the end of the year.  Oh and a trip to my primary for a flu shot as soon as I schedule that.  But all easy stuff. And with family here and next months Donate Life walk, then the holidays, the rest of the year is going to fly bye.  Which reminds me! I have so many fun holiday activities planned, thanks to Pinterest, my new love.  I should share them with you all.  Wishing you all a fabulous rest of the week!

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Drained

Today has been yet another one of those days.  I got up, did our usual morning routine.  And one the walk home I kept telling myself that I needed to do something productive today.  But when I got home I think David was thinking one step ahead of me.  He told me to go back to bed.  So I did.  Well, first I played on the phone until he insisted a second time :)  Didn't wake up till 11.

I did manage to do one thing today and that was a little laundry.  One load.  And the rest of the day was spent sitting on my butt in front of the computer.  My pain is different today.  Hopefully that's not to bad of a thing.  But I've been hiding away in my room so that a big deal wouldn't be made about it.  I think its just a combination of stress and sickness and frustration.  I just want to curl up in a ball and be left alone for a day. I am also feeling a little worried that I have not had one donation yet to my Vital Alliance Walk.  I know money is tight for everyone, so I am just not going to sweat it!

Since that's not going to happen, I am off to get the boys fed, in the bath and off to bed.  I hope everyone had a great weekend. Much love!

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Good old Kwaj days

If you were a kid on kwaj in the 90's, you know what I'm talking about.  The door was always open, Dad was always cooking something and on the weekends, you had to be there. We were know as "Schilling Kids"  But after 39 years, 6 kids and moving though 5 houses, Dad is finally leaving Kwaj.  And I still cant wrap my head around it.

I'm trying to convince myself that the memories are enough.  Playing manhunt in new housing.  Us island kids scaling the palm trees so the new kids would never find us.  The parties at the Rodrigues house were always full of fun and the best music and food.  Lunchtime at the Yuk Club.  I remember riding though the alleys as fast as we could so we could be the firs in line.  All for a greasy cheeseburger and fries.  Almost as good as the chicken sandwiches and cheese fries Betty would make for us at the Beach Snack Bar.   Christmas time growing up was one of a kind.  I remember waiting for Santa to get off the plane and walking behind the firetruck as he threw us candy.  The tree lighting ceremony was beyond magical.  Summer fun was FUN! Days spent at Aunt Vi and Uncle Hals.  Tubing with the Whites and having Tim take my bottoms with him when he fell off and not realize it until after I waved all proudly to the 20 some people waving at me from the pier.  The school dances back in the day were fun to crash.  The Teen Center was cool, but the Gazebo was cooler.  And almost as cool as the Cheese!  Oh and the superswim.  Am I the only one that remembers this?  I think we were raising money for Somalia.  But spending the night at the pool and swimming for 2 days and nights was so much fun.  Then there were sports.  Mr Sherril was the most awesome coach ever.  Bigej trips.  I'm talking about school ones.  Dad making us the 5 foot subs that became a must have.  Musubi too.  Then there were the other boat trips.  Like the one where I got pushed off the boat in Bigej pass. Thought I was going to die for sure.  The girls will remember our Superbowl party.  Best one ever.  Or dancing to dads 50's music.  The summer we caddied at the Golf course was way to much fun.  Having chili dogs afterwards in the country club.  Smoking under the tree behind the gear locker.  Storm Zelda and setting up class rooms in the CRC.  Boogie boarding in the ditches by bunker hill. Field days.  Shaving cream socials and the haunted house.  Fishing with Dad and watching him reel in the biggest marlin I have ever seen to this day.  Making lures at the boathouse at Uncle Tonys Shack.  The laser disk club in the old teen center by the family pool. Collecting gecko eggs and hatching them in jars at home.  The countless Sunday BBQ's at the beach.  Snorkeling on Saturdays in Marine Bio.  The fort in the tree by the last street in new housing.  Secret Beach.  The hideout in the Jungle by DCCB.  And the bushes by glass beach. The turtle pond and the lifeguard shack.  The Emu and fish frys at the Pacific club. Going to the bakery to see our moms and get donuts.  And then they brought baskin robbins out and that blue ice cream.

I could go on and on. As much as I complained growing up, I could give anything just to lay on the beach one more time.  Or to go on one more boat trip.  I miss the crystal clear water the most.  So peaceful.  Sometimes I used to go out to the end of the jetty in the middle of the night and just sit.  Once I swam out the the ski dock and was to freaked out by the phosphorescence that were glowing in my trail behind me to swim back till sunrise when I could see again.  Like I said, so many memories.  Who knew such a small place could make such a big impression.  I would love to take the boys back one day.  I guess I should have  found a way to do it before now.  

OK enough of this.  Back to the present.  Dad and Sandy will be going to San Diego.  And Im looking forward to having him on the same timezone as me.  And hopefully being able to see him more than once a year for a few days.  Now we will be able to Skype since it didn't work on Kwaj.  And they can stream videos of the boys with out having to buffer for a whole day.  See Kwaj has its cons too!  It will always be home.  How am I more sad about Dad leaving than I was when I left?  

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On a positive note...

It would be a bit of an exaggeration if I said I have never been so tired of going to the hospital. But that is how I feel right now. My blood has been such a pain lately but I'm hoping Ill be set for another month now. First it was to high and so we lowered my blood thinners. Only to have it bottom out and have to change my doses each week. But Dr. H called and looks like I'm back to therapeutic for now. After a month and a half of weekly checks, I'm free, for a few weeks anyways.

I was talking to day yesterday and he asked if I could feel when my blood is off. For me, a low INR (thick blood) is usually accompanied with lots of sleeping and just all around stiffness. My body just feels like its filled with concrete. When my INR is high (thin blood) I tend to get lots of headaches and dizzy spells so horrible I get nauseous. I'm not sure which one is better. If my blood is thick, I run the risk of throwing another clot. A blood clot in my liver is what landed me in this position. I could develop a clot in my lungs or even worse my brain and have a stroke. But with thin blood I run the risk of bleeding out. So everyday task become extremely dangerous. I could slice my hand cooking for washing dishes. And If I hit my head, I could develop a brain bleed. If I were to get into an accident, I could easily have internal bleeding. So either way, I'm pretty much screwed. That is why it is so important for me to make sure I am at a safe level.

It is so easy to over look the blood disorder that started this whole thing. I have what is called Prothrombin Gene Mutation G20210A. It causes my blood to clot easily. I have had it my whole life. It is most likely the cause of my 2 miscarriages and the reason Anthony was premature. Luckily I am not a smoker, since smoking increases the risk of clotting. But I did take birth control pills, which could have played a part in it all. I hate that there is not telling how long I have had the clot in my liver. When I was pregnant with Anthony i was told I had a third kidney, but when I got pregnant with Alex my spleen was pushed all the way down in my pelvis so that explains that. So maybe I had it then, who knows.

In a way I am very thankful that the clot developed in my liver and not in my brain or lungs. Yes the thought of having a liver transplant sounds scary, but at least I have a chance. And I am well enough to enjoy what time I have now. when I think of all the things I could not have today if I hadn't made it this far, its easy to see this as a blessing. That sounds weird but the truth is, as bad as this is going to be is nothing compared to what it could have been.

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