Thursday, March 9, 2017

Frittering Away the Days

Time is slipping away.  I have a normal routine and it drags me out.  I'm gaining weight.  I've now gained about 20 pounds in bloat.  The whole IBS vicious cycle with the water pill, potassium and IBS meds is wrecking me.  I'm not really sure what real energy is.  I thought I had a bit of it last week only to plunge back into the funk once again.  Maybe I used up all the energy I had to spare last week?

DH is doing quite well in school.  He is still in the running for honor graduate.  Geez that thunderstorm sounds like it is going to blow the roof off.  Sorry for that bit of interruption.  Brain see or hears something it processes and off it goes on yet another path.  So yes DH is doing well.  Today he called me from the school house to help him fill out his dream sheet.  The dream sheet is where military personnel write down their list of dream assignments.  It doesn't mean they'll get it, but it is a dream sheet.  We put Hawaii at the top of the sheet.  Who wouldn't want to go there for a few years?  They have a good liver transplant hospital there too.

E is doing well.  I can't believe that in just a few months she'll be 3 years old.  Where did my baby go?  By the time we move to the next duty station we'll be able to enroll her in preschool.  She continues to spout off large words and long sentences.  Her math skills are improving too.  She has good manners and is rarely a bad child at restaurants.  She isn't perfect.  She is stubborn, and wants to do things her way.  She still has her daddy wrapped around her little finger too.

Wednesday, January 4, 2017

Liver Biopsy Results

Steatohepatitis mild.  It has improved since the very first diagnosis of moderate I'm pleased to say.

However the labs showed that my MELD score has gone up and I'm now at a 7.

I did bleed out during the procedure which rarely happens.

Such is life.  It is a see saw.  I improved but I didn't.  I'm okay with that.  I'm not going to die today unless something really bad happens like I trip over a match and impale and/or cut a major organ or artery.  Likelihood of that is 0.4%.

Monday, December 26, 2016

My Little Workshop

I've been keeping myself busy making jewelry.
Kyanite and White Sapphire set in sterling silver

cat's eye Moonstone, Peridot, and Alexandrite set in Sterling Silver

10kt Rose gold with diamond accent with 9x7mm Smokey Topaz

some of my gems and settings

a few of my tools

My mom sent me a nice Dremel set including butane torch and engraving tool.  She also sent along a Dremel stand so I can do more hand free work.  I have to admit for being untrained I think I'm doing pretty darn good on my jewel. 

The 30th of December I have a liver biopsy.  Wish me luck.

Sunday, December 25, 2016

Merry Christmas

Our morning started off quite well.  Eily opened up her gifts and helped us open up our gifts.

J videoed a good portion of the morning.

J did all the cooking and all the clean up.  Yay!  Mommy got to take a much needed afternoon nap before the guests arrived.

Our neighbors came over.  Julia, Nick and little Greyson brought over some wonderful rolls.  Jesus arrived a little late but his place at the table was set.  Jesus stayed the longest with us since he no one to go home to today.  Julia had the day off from hard work of housework and loved it as much as I did.  We are making plans on doing more things together after the holidays.

Everything went fine until the late evening call.  Wishing I hadn't called now.  Turns out some of the family doesn't like finding out that our precious daughter was conceived using ART.  Noses got bent out of shape.  I said the f word quite a bit.  I feel as though we should educate the public more so that our child have a future just the same as any kid out there.  I mean it is going to come out that they are children of ART sooner or later.

I cried.  She is my baby.  I detest those that dare call her a "non human".  May they rot in whatever hell exists.  I can't believe I actually got a lecture from a family member tonight to basically not tell anyone about how she was created.   Why?  I'm not ashamed of my baby.  I'm not ashamed of the process.  If I can enlighted people to the truth I will.

It is so nice to find other parents that had infertility issues that used ART too.  It is a relief when I move to a new installation to find someone that is open like I am about the struggles we go through.  To hide it is to hide behind a veil of shame, to hide in a closet crying in pain while others have what we long for, what we would die for.

How can those people be a hypocrite on a day like today of all days.  A day where Christ our Saviour was born.  He who was born by the "grace of GOD" through the angel Gabriel much like an ART procedure.

So put that on your fork dear family and eat  it with whipped cream.

Friday, November 18, 2016

Searching for Doctors

I thought for sure that with the referral I received in the mail, from Tricare, yesterday that I had my appointment for the gastro doctor in the bag.  Nope! Not even close.  I mean the distance I had to drive to this place was nuts but it was in network so I had no choice, right?

I called the doctor's office.  Turns out she is no longer working at this particular office.  Oh jeez!  Great.  I asked the receptionist if the other two gastro docs would take the referral as it states that my referral is basically an open one as long as the provider is in my network.  Not only would she not take it, she made me go call my insurance office too.  Turns out the doctor she is the receptionst for does take my insurance.  Well they can bite my buttons.  I searched and found a different doctor closer.  The reason why Tricare didn't pick this doctor first is that this one is more costly.

I think I've complained before that Tricare is cheap!  Oh and that it doesn't attract quality doctors.  The first doctor they would have sent me to was only a 3 star rating.  Not very good for having practiced for 20 years.

I called the doctor that is closer.  I'm hoping that I'll hear back on Monday.  His office is only open M-Thursday.  He also only a 3 star rating.  My insurance is not going to attract the top doctors.  I'm not sure what insurance will.

Good news is that I have a lab draw on Monday.  Tuesday I have my contrast CT to see what is going on in the left side of my upper abdomen.  I have pain.  It hurts to the touch.  It is now making it difficult to eat.  I cannot get comfortable when I sleep.

So tired my brain is having difficulty typing.

Wednesday, November 16, 2016

Melting Things Down

It all come down to a puddle of melted mess at times or so I figured out last night.  It wsn't just because I was melting down Eily's crayons to make new ones but because really that is how life is. Messy!

DH was stressed about his position in his class.  He is worried because he is no longer in the top two of the class.  His last grade made him fall to third.  Now he is struggling to make it back to the top again among a class of nine.  Everyone seems to have grades in the ninetys.  He wants to make THE LIST for graduation not just graduate.  With another test coming up on Friday he is stressed.  His stress is causing me stress and Eily stress.  We all feel it in different ways.  I wonder if his stress is the reason why Eily can't poop no matter how much prune juice and metamucil we give her.  I wonder if his stress is the reason why my blood pressure is going back up.  So I spoke to him calmly last night.  It took a bit.  He didn't want to even sit down with me and discuss his issue.  He didn't want to talk about his attitude. Guys don't have problems.  Guys don't have attitudes.  Especially military ones.  I got the whole, "I don't want to talk about it.  End of story.  I'm leaving the room now.".  I was surprised I even got that much verbage.  I made him talk.  I have my ways.  It is a calming voice.  It is the voice of authority.  It is the mommy voice.  All rolled together it does work.

The mess of it is that I am dying.  Not today.  I'm alive today.  We are all dying from the day we are born is what I tell most folks.  Depressing?  Yes I guess.  But we have plenty of time in between the birth and death to make a difference in the lives of others usually.  For some it might just be a breath of air or a smile and they slip away.  For most of us we have more time.  I'm spending that time making a difference in any way I can.  Maybe I can only bake cookies for the soldiers at my husband's school for now.  Maybe after I get a new liver I'll be feeling better I can do more again like I used to?

I know I make a difference in my daughter's life every day.

So to melt the rest all down to facts of what I still am waiting on

  • Gastroenterologist to call
  • Hepatologist to call
  • One of the above to put me on the Liver Donor list my MELD score already makes it so I'll be on it
  • Contrast CT of Left Side Abdominal Cavitiy to rule out Splenomegaly
  • More Labs for my Liver
  • Hopefully a Live  A Positive Liver Donor Match

Monday, November 14, 2016

Squeezing in a Doctor Visit

Today I was able to squeeze in a doctor visit at my clinic.  I did have to beg and use my condition.  After all I did need to get it on record with the paperwork I have on hand.  See the Primary card doctor they have me seeing isn't a doctor at all but a Nurse Practitioner.  They are good but I need to see a doctor.

Besides my PCM NP was busy today they told me.  Meanwhile I got the first of the Hep B shots done.  I'll need one or two more in the cycle.  I'll know more about that with each visit.  If you know more readers tell me.

So I got to see the doctor.  The actual doctor that I had my first appointment with at this clinic the first time I was here.  He admitted right off when he saw my spouse that he the doctor needed a haircut.  The Army has appearance standards.  I offered to shave his head for him.  Just a bit of laughter for all of us there.

The serious part now.  He is putting in a referral for me to see a hepatologist in St. Louis, MO as he cannot put me on the donor list even though he knows I need to be on one.  His nurse mentioned I need to have a case worker also.  He said they'll coordinate my care one I've seen the hepatologist in St. Louis.

Yes, I'll still be seeing the gastroenterologist off post.  I hope to here from them soon.  I hope to be able to coordinate all my appointments over Christmas so that my spouse can go with me.  It would just make things easier.  Otherwise I'll be dropping off the little one at a friend's house or daycare and driving alone to St. Louis.  Two hours there and Two hours back.  Yuck!

My doctor palpated my abdomen on the right side today to do the liver check.  It was really tender.  I had him check the left side too since I've been getting some odd pain there as well.  Not in the stomach either.  He got the spot easy enough.  It could be my spleen.  So to check it out he is scheduling a contrast CT, but not STAT.  So maybe that too can be done over Christmas?

Family was wondering if we were going to fly home.  Um, no.  I'm not well enough.  I'm hoping they eventually realize just how serious this situation is.

I'm a fighter I'm going to fight this.

If you would like to see if you could be a possible A Positive Live Liver Donor please contact me.