6 years of one weirdness explained

So I am a bit different . . . odd . . . weird . . . I march to the beat of my own drum.

I always have been and I am totally ok with it now. (I used to feel very insecure about it.)

Even in high school I didn't feel the need to "fit in".

I have always done my own thing.

Well, 6 years ago I went to the dr. because when we went to increase our life insurance, they discovered I was spilling protein in my urine (sorry to much info?) Anyway, I went to my primary who ran tests and sent me to a nephrologist (kidney dr.) and a rheumatologist (lupus dr.). They thought I was developing lupus and it was attacking my kidneys. Not such a great thing!

So I went through more tests and more tests and the results were always the same "You are weird. We don't know what is going on with you so we are just going to watch you". Great - I now had laboratory proof that I was, and still am, officially weird. My labs were off enough to show something going on but not off enough to do anything about.

We delayed having Evan because they were afraid that a pregnancy would trigger a full lupus outbreak. After a year of waiting and watching and nothing changing we finally decided we didn't want to wait any longer and got pregnant. Everything was fine during the pregnancy but they worried about after the pregnancy and that my auto-immune system kicking back into gear would trigger it. Nope, we were lucky and I was just fine and went back to my exact same level of weirdness.

We decided that baby #4 probably just wasn't meant to be. We risked it once with Evan and got lucky. We didn't want to risk it again. I would rather have 3 kids with a healthy mom than 4 with a sick mom. So poor baby #4 just isn't in the plans but we think of him often and he does have a name and causes all sorts of trouble around the house. If the kids won't fess up to making a mess, we say "hmmm, must have been Trevor."

Well, a year ago I switched kidney doctors. The new dr. started off the same "yep, your weird." He thought I was boring because he couldn't do anything to treat me because the treatments he could do had bad side effects so the treatment wasn't worth it because my labs weren't off enough. But what was great was this dr. thought outside the box. Long story short he tried something different that wasn't even in his field to treat.

So during the time he was trying that (it was a 3 month treatment) I went to my primary because I thought I had a bladder infection. They did the urine test and discovered that I didn't have an infection but that I had A LOT of blood in my urine. They sent me directly over to get x-rays of my kidneys. Very scary and freaky; especially because Kurt's cell had died and I couldn't get ahold of him to come be with me.

Well the x-ray showed that I didn't have 1, didn't have 2, but that I had 3 kidney stones! No wonder my kidneys were spilling blood, they are getting beaten up with stones moving around in them.

So I sent those results to the kidney dr. and he got all excited! Finally he had something he could work with. He ordered CT scans, lab work, had lab work mailed to me from back east. All sorts of good stuff!

When we got the labs back they showed that my ana test has gone back to negative (because of the 3 month treatment) which would show that I am not developing lupus! SWEET! That is great. My rheumatologist says I still have 2 little labs that are not normal but what does he expect - I am a bit weird - even my blood.

So my nephrologist said he doesn't need to see me anymore because my kidneys are fine - they just have stones which have cause the protein and blood for the last 6 years! But now I have to go to a urologist to deal with the stones. Turns out 1 stone was not a stone after all. So I have 2 stones: one stone on my left side which the urologist said would drop me to my knees when it decides to pass - looking forward to that! And I have one on my right side that is the size of half a grown man's pinky finger. It's a BIGGY! They are going to have to blast it with waves and the chunks that come off of it may even be too big to pass so they may have to blast again. I have been growing this one for quite awhile - apparently 6 years!

So after 6 years of "your weird" we finally have something to work with. I go in on March 1st for the blasting! Hopefully this will solve the mystery.

And who knows, maybe Trevor will get his chance to join our family after all!

December and January?????

Does anyone know where those 2 months went?

They just flew by!

December was basically spent in and out of the hospital with my mom. She had a rough month. On the 7th she had her first chemo-embolization treatment which she didn't respond well to at all. She spent the next 2 weeks in and out of the hospital trying to manage her pain. She was home for about 8 days before she got a flu bug (or something) on Christmas day. She was back in the hospital in the ER on the 27th.

Kurt and I did our Christmas shopping all in one night on the 23rd. Nothing like waiting til the last minute! It was a small Christmas this year so the shopping was pretty easy and quick, thank goodness!

January started off very fun. On New Years eve we had friends spend the night with us (even though they live 5 minutes from our house). We put the kids to bed and then stayed up all night playing Wii. We had a great time. Well, the next morning the husbands got a crazy idea to go camping . . . that day! The wives, of course, where not quite as excited for such a quick trip but somehow, and we still can't figure out how, we ended up leaving within 2 hours. Thats right - 3 families, 2 camping trailers, all pack and out the door within 2 hours. That was by far the fastest, most spontaneous camping trip ever! It was quick too - only 1 night but we had a GREAT time! Pics to follow at a later time (too tired tonight).

Mixed in through Dec and Jan were several dr. visits, CT scans and numerous labs for me. Oh, the fun. More details to follow on that one as well.

In January my mom had her 2nd chemo-embolization treatment and we were prepared for the worst this time. Fortunately, it was unneeded preparation - THANK GOODNESS! The section of the liver they treated this time was smaller so they only had to use about 1/2 the chemo they did the first time so she recovered much faster. And, as you know from my last post, she is doing AMAZING! Love it, love it, LOVE IT!

AMAZING NEWS!

We got AMAZING news today - ALL my mom's labs have returned to "normal" range, they are not even on the high end!

Which means that HOPEFULLY she is FINALLY in REMISSION!!!!!

2 YEARS in the making!

Makes the horrible chemo-embolizations treatments all worth it!

I can't even begin to describe the thankfulness, the happiness, the "I-don't-know-what-I-feel-but-it-feels-great" feeling that I feel.

All I can say is "thank you Heavenly Father for answering our prayers!"

THANK YOU!

"A Touch of Understanding"

Kurt and I attended an assembly today at the girls school. It was a program that teaches kids about people with disabilities. We really enjoyed it and think they did a wonderful job.

The first part had 5 hands-on/interactive stations:

1. they had wheelchairs for the kids to push themselves around in so they get an understanding of how it would feel to be in a wheelchair

2. a table with a lot prosthetics for the kids to look at and touch and learn about

3. a table where they discussed "silent" disabilities like autism and dyslexia. They had long mirrors on the table for the kids and they had to look in the mirror and write on their paper to understand the frustrations of dyslexia and they had earphones where we listened to how it sounds for people who have autism.

4. a table where they learned about braille and were able to write their names

5. they had walking sticks and we had to walk with our eyes closed only using the sticks to find our way.

After that we went to another room where they had people talking with different disabilities. There was a girl, Anna, who was born with cerebral palsy and she spoke with the help of a talking computer. There was a guy, Mike, who fell off his roof at the age of 23 and suffered a serious brain injury. He has not been able to talk since his accident and he also had the use of a voice computer (synthesizer). There was a guy, Paul, who hydroplaned his car when he was 19 and suffered a brain injury. There was a 13 year old girl, Jordan, who has dyslexia. She sang 2 songs on her guitar and did a really good job. There was another guy, Mike, who was in a race car accident on the salt flats in Utah and lost both his hands. He had two electronic hands that were very impressive.

They did a great job explaining to the kids and showing them that people with disabilities are people too and that they want to have friends, that they have feelings and that they want to be loved just like anybody else. They also did a great job about teaching the kids to make the best out of every situation and that people with disabilities can do a lot of great things. It was an amazing assembly.

It was so neat to see an uplifting, educational, motivational assembly like this. We found out that they are located right here in Granite Bay and they are trying to expand locally, statewide, and someday, nationally. They are an amazing program and we hope they succeed. We think EVERYONE should go to this! If you are interested, their website is: www.touchofunderstanding.org.

Here is a video from their website:

Okay, so the video isn't working but you can see it on their website.

Boys and the Mud

Kurt had to work in the rain today.

Had to use the Bobcat and everything.

Poor Guy!

Oh, wait, except he LOVED every minute of it!

Here is the fruit of his labor:

He made his own personal quad track in our company's storage yard.

Ya, it was a rough day for Kurt!

Can't you tell by his huge smile?

The difference of a few hours

What a change!

I can't believe what a great day my mom had. I took her a Jamba Juice this morning and she drank it down pretty quick. Then she had a Mighty Shake. We were so glad to see her "eat" something. She had hardly eaten anything the last 8 days. Then she took a huge 5.5 hour nap in a really deep sleep. When she woke up she wanted another Jamba Juice (which we got for her) and ate a muffin, applesauce and drank an Ensure. WOW! We were thrilled!

Then because she slept all day (9am - 2:30) she didn't have 2 of her pain meds since the morning and she wasn't hurting when she woke up. YIPPEE! She still had a patch on that was giving her some relief but no pills or morphine. She started asking when she could go home - a good sign. I told her that it probably wouldn't be until tomorrow (Thursday) but when her dr. came in at 4 pm she talked to my mom about her pain level and they decided that she could go home!

THAT'S RIGHT -

MY MOM IS HOME TONIGHT!!!!!!!!!

I am so relieved! I am so thankful!

Thank you to all our friends who brought us meals, picked up kids, watched kids, ran kids around. It was so helpful! I can't even tell you how much it meant!

I am especially thankful for my amazing husband who was by my side the last few days in the hospital and also at home doing all the household chores. That's right folks - Kurt did laundry!!! His all time most disliked chore. (He used to claim he couldn't figure out how to work the washing machine but now I know better!)

I am going to bed one very happy, thankful, blessed, at peace person.

Good Night!

Still at the hospital

My poor mom has had quite the week.

Last Monday (7th) she had a procedure called chemo-embolization performed on her liver. Her insurance declined Stanford's radio-embolization procedure so this was plan B. They are basically the same thing - they go into her liver and inject either chemo (for chemo-embolization) or radiation (for radio-embolization). The dr. said that the first 6 hours would be the worst and then she should improve after that. Usually the hospital stay is 1 night.

Tuesday she was still in a lot of pain so they kept her a second night.

Wednesday she seemed to be getting better so they sent her home with pain pills.

Thursday the pain increased probably due to all the hospital drugs wearing off and of course, her dr. was on vacation so my dad talked to the dr. on call and he changed the medicine.

Friday she was still in a lot of pain so they increased the dosage. They kept telling us that pain was to be expected and it should start decreasing.

Saturday we continued with the increased pain meds to see if we could get it under control.

Sunday my dad and I got her to the infusion center for her magnesium transfusions. She gets these everyday and hadn't had any since the hospital on Wednesday so we thought this might be contributing to her pain, weakness, etc. The nurses were really concerned about her because her blood pressure was on 68/54 (remember normal is 120/80) and her heart rate was up. They gave her some fluids and her blood pressure came up but still not normal.

Monday I took her in for another mag infusion. Again her blood pressure was way down and the nurses were really concerned because of the amount of pain she was in and how weak she was. She hadn't eaten all week due to the pain. We had managed to get a little bit of sherbert, oatmeal and chocolate shake in her during the week but not enough to keep her strong. They immediately called her dr. who said that if she wanted to, they could admit her into the hospital and give her stronger meds to help with the pain. She agreed, which only showed me how much she was truly hurting because my mom doesn't like the hospital. So Monday she was admitted.

She is on 3 different pain meds now which have her all loopy but at least she isn't in pain. I have been with her everyday in the hospital to make sure she gets what she needs. She doesn't like to be a "trouble" to anyone so she sometimes won't ask for what she needs plus she is so loopy she doesn't know what she needs at this point.

When the liver is healed enough she should be able to manage the pain with pills and not need to be in the hospital so we are on a wait and see basis. It could be tomorrow when she goes home, or it could be another couple of days.

The "normal" time for the pain is 2-3 days after treatment - we are on day 9! Yikes!

I hope it changes soon! Please keep her in your prayers. She is such a sweetie! She is in pain and all loopy from her meds but she is still so sweet and the nurses just love her.