Thursday, May 30, 2013

I Miss You, Grandma


Today marks the 7th year since we lost my Grandma.
We have been without my Grandpa significantly longer - since 1982, I believe.
I didn't know him as well, since I was pretty young when he passed away; 
I regret not having more time with him.

I live across the country from my Mom, the holder of all the photos, but I have managed to dig up a few pictures of my Grandma that make me happy.

When I was 8 days old - look how cute she is in her little kerchief!
It touches my heart that she and my Grandpa are holding hands.
This picture is labeled in her handwriting and came from her photo album

Grandpa, too.  Look at all the love in their faces.

My beautiful Mom, handsome Dad, and good-lookin' Grandma & Grandpa

My Grandma used to wear clogs a lot - very stylish!
In fact, I got my first pair of clogs because I liked wearing my Grandma's pair around so much!
Here I am, at 2, stealing her shoes!
(This picture was taken at Square Lake in 1976, over the Memorial Day weekend when the U.S.
celebrated the bi-centennial - two hundred years of being a country!)


My Mom told me today that my brother, Mark, was doing "backward kisses" (raspberries!) on his baby daughter's tummy over the weekend.  He got that from our Grandma.

She laughed a LOT.
She prayed a LOT.
She adapted and learned new things like no one I've ever known - when she was 50+, she moved to Paraguay for a year (two years?) to teach some American kids living there.  
She then lived in Arizona (far away from most of her family) to teach at a school for Native Americans.  
She was curious, whip-smart, generous, and kind.  
She made everything prettier (check out her gorgeous table setting and the picture farther down of her palm tree, surrounded by painted red tulips!)
She learned how to do e-mail when she was in her late 70s!

When I found out I needed to follow a gluten-free diet, she didn't hesitate about continuing to have us over for meals - and everything was always delicious (and beautiful, as you can see!)





She painted these tulips bright red every fall.
I have them now, but they are in desperate need of a new coat of red paint.

from around 2002
(and she's wearing my favorite color
- it matched her eyes!)

Grandma,I love you and 
I miss you.

And I know I'm not the only one.

Wednesday, May 29, 2013

Protein + Soda Boxes

The weather is beautiful here in Arizona, and I have had a great deal of energy this week!  
It may not last forever, but I'm going to enjoy every moment of it while it does last.  

First, some adorable videos of our funny little critters.

Stephan loves hanging out in the canvas shopping bag!
video


Stephen is a lovey-dovey.  Especially with his Daddy!
video


Kittens exploring a pineapple
video


Soda Box Fun #1:
video


Soda Box Fun #2:
video


And then a health update:

One of the hopeful things I have discovered is that a liquid diet has a similiar rate of success at inducing remission in people with Crohn's as does Prednisone.

Let me break that down.

Prednisone is a bad drug.  I mean, I know it probably saves people's lives sometimes, and for that reasons, it's not evil, but it has nasty side effects.  I am not sure there is much that would convince me to take it.  
A liquid diet means just that: drinking liquid nutrients rather than eating them in solid form. 
Since the act of digesting is what causes damage, drinking instead of eating allows the intestines to rest and heal.  

I also talked to my Auntie Cindy, who has had some severe digestive problems of unknown cause.  She manages them extremely well with diet and nutritional supplements.  She gave me the names of some things that have helped her, and I am adding those to my rotation.  Something called Metagenix InflammX has helped her inflammation decrease significantly.  She also creates a nutrient-heavy breakfast drink.

Since my system has been uncomfortable and unhappy, I haven't wanted to eat a lot of solid food.  I decided for a few days I will see if makes a difference to drink instead.  I went to Sprout's and got protein powder (plant-based rather than milk-based, because it's less likely to cause problems), a greens powder (vitamins, minerals, and the good stuff from vegetables and fruits that cause me problems), and some almond milk.





 I mix them up in the blender (one scoop chocolate protein powder, one scoop greens, one cup almond milk and one cup water) and that's it!  It's tasty and fairly filling, and it doesn't make my stomach hurt.  
It's really nice that my stomach doesn't hurt after a meal!





The last two days I have been using this shake as breakfast and part of lunch.  At lunch I have been adding some crackers.  At dinner, I've been experimenting to see what sits well.  Ground beef, surprisingly, has been a friend.  Pizza, also surprisingly, has been a friend.  Vegetables have been a foe.

I am enjoying visualizing my intestines smiling at me and getting healthier each day.  

I was able to find a lab that takes blood for the test my Gastroenterologist ordered and I got an appointment for this afternoon.

Happy Wednesday!

Sunday, May 26, 2013

In Memorium


My two heroes
performing a traditional Memorial Day ritual



THANK YOU

to those of you 
who have served our country in the name of freedom and justice.


Even though they did not give their lives, they sacrificed for me and for all of us who
call this great country HOME.


My Grandfather, Paul, and his wife Dorothy.
My Father, Tom, and his wife Dory.
My Father-in-Law, Rick and his wife at the time, Linda.


I remember you and honor you.

Paradigm Shift!

A tree on the roof-top cafe at Dr M.'s office building

Heads-up: This is all about health stuff.  Skip if desired!

Friday I had an appointment with the gynecologist who originally diagnosed my endometriosis and performed my surgeries, Dr. M.  I initially made the appointment because I wanted a second opinion as to how we should handle the possibility that endometrisosis was growing on the outside of my colon. (The first opinion was simply to wait until the pain got too severe, then go in and get it all out surgically.) 

On Thursday, however, I got the call from my gastroenterologist, Dr. R., telling me that I appear to have Crohn's Disease.  So then we were concerned that maybe I was going to have to deal with both disorders.

The summary from the visit is that Dr. M. does not think the symptoms I am having are endometriosis-related AT ALL.  He could no longer detect any of the endometriosis implants I had way back when, even the really big ones.  They seem to have died out!  

According to him, I am not crazy for thinking this new pain is the same old pain, though;  It's difficult to tell from symptoms alone.  I also probably have more pain from digestive distress because of adhesions (abdominal scar tissue) caused by previous surgeries.  

As he poked around on my abdomen and I told him where it hurt, instead of being mostly in my lower-abdomen, as my pain used to be, it appears to be in my upper abdomen, and that's likely digestive pain rather than endometriosis.  I honestly couldn't tell the difference between the two places he pushed on my abdomen ("upper" vs "lower"), but he said they're very different for the purpose of figuring out whether it's pelvic pain versus abdominal pain.  

Dr. M. had no doubt that the biopsies were accurate if they said I have Crohn's 
(and he said he's sorry I have to deal with it - he's a kind man).

So what this means to me is that as far as we can tell,
 I DO NOT HAVE RAMPANT ENDOMETRIOSIS!!!!

Since Thursday, I have read up a LOT on Crohn's, and it's not the nicest of diseases, but it's not the most terrible, either.  There are lots of ways I can make myself healthier even before considering medication.  I know those of you affected by Crohn's will probably think I'm a loon, but I feel very happy right now to deal with Crohn's rather than endometriosis.  No doctor is going to suggest to me that in order to treat Crohn's Disease, I should stop using estrogen and become crazy from lack of hormones, causing emotional distress to me and my brave, long-suffering hero (Greg). 

With Crohn's, there are diet modifications I can make that will help, there are medicines (some with major side effects, some with fewer), there is more research, there are simply more OPTIONS.   In the worst cases of Crohn's, there's still some chopping that often happens, but there is a loooooong way between where I am and any choice like that.  And I feel like an active agent in this rather than a victim.  Endometriosis often made me feel like I was on the defense, just trying to keep up, but I feel as if I can be on the offense with Crohn's somehow.  I don't know if that makes sense, but that's how I'm feeling.

At first, I thought this diagnosis didn't make much sense, because I "didn't have the symptoms".  Well, I have been thinking about that more, and realizing that I have adjusted my life considerably due to my digestive system lately.  I thought I was just getting older (but 38 is not old!) and that everyone needed to avoid a large number of foods because they don't "sit right".  I realized yesterday that there is a list of foods (OUTSIDE of the gluten-free diet I already follow) that I no longer have been eating because they cause major problems for me.

These cause problems every time I eat them:
watermelon
hummus
pinto beans (and therefore my beloved Mom's chalupa recipe doesn't get made!)  :(
kidney beans (no more chili!)  :(
popcorn, caramel corn, kettle corn
ice cream
raw bell peppers (red, yellow, green)
raw onions
orange juice
corn (even cooked)

These cause problems when I am having a flare-up:
meat (especially pork, ham, sausage, red meat)
dairy (especially milk, regular yogurt, ice cream)
raw vegetables

I haven't been wanting to go out to eat at all, because I felt sick every time I did (gluten-free Barro's pizza, for some reason, is the best option because it's not greasy and it seems to sit fairly well).

Thinking about this list, I realized that the foods that don't work for me anymore are the foods that are "high-residue" (things that have a lot of little scraping parts as they are digested - like popcorn and raw vegetables) and high fiber (like beans).  That fits the Crohn's profile extremely well.  I also realized that during certain times when my digestive system has been "acting up" over the last year or two, I have asked myself regularly, 
"Why does my stomach hurt so much AFTER EVERY SINGLE MEAL?!"  

I actually asked myself that today before remembering that there's now an identified reason that my stomach hurts after eating.

Just proves that we can't tell what is going on in our bodies even if we think it's crystal clear!

My next mission is find a lab that will take blood for the blood test my gastroenterologist wants.  I am not certain why it's important to get this test, since Crohn's is diagnosed mostly by biopsy (which I already had), but I guess confirmation is never bad, especially since I already thought these symptoms were being caused by something else.   

I will post more about the non-medicinal treatments that I'm researching in the next days and weeks.

Thanks for your prayers and well-wishes!

xo

Thursday, May 23, 2013

Capsule Wardrobe


Warning:  Men, you'll probably want to skip this post - it deals with fashion in gruesome detail!


I have been inspired by a few bloggers I follow and their "capsule wardrobe" experiments (click here for a great example).

The idea is to choose only a few (my goal was 10) items of clothing that can be mixed and matched in a way that allows for the most possible outfits.  This allows for much easier dressing in the morning (because everything goes together!) and it simplifies everything.

The following is my idea of a capsule wardrobe.  I am going to use a variant of this for my annual trip to Minnesota!  And in fact, I'm liking this experiment so much that it is changing what I purchase (and do NOT purchase)!


Christie's Theoretical 10 Item Capsule Wardrobe (Hot Weather):
This capsule wardrobe is created from items I currently own.  It does not include knickers, bras, sleepwear, exercise clothing, jewelry, unusual weather wear, etc.  Those things can be used as needed at any time.

Some capsule wardrobes only contain the major pieces of an outfit, such as tops and bottoms.  The woman in the link above doesn't count t-shirts in her item count - they count as "extras".  Some capsules include shoes.  I wanted to play with the idea of having just a few simple pieces of clothing that I could put together in different ways, so I included t-shirts, and shoes in my count.


1* One pair metallic gold wedges by Born
The buckle will fall off soon.  When that happens, I will substitute a pair of nude wedges.
similar available from eBay or www.zappos.com



2* One pair red ballet flats by Born

available at www.zappos.com



3* One denim skirt (a-line)
This is my preferred style, though on me it would be a couple of inches longer:
www.dillards.com


The one I have came from T.J. Maxx.    



4* One patterned pencil skirt
www.target.com



5* One black and white striped light cotton skirt
www.target.com



6* One chambray/denim patterned button-down shirt

mine is from Forever21 about a year ago

similar are available lots of places


7, 8, 9, & 10* Four t-shirts (long in torso) in cornflower blue, gray, red, and navy
 


 All - www.target.com


That's it!  Almost all of these things can be combined together to make interesting new outfits. 
I will give you a couple of examples!



This might be one option:  
gray t-shirt + denim skirt + red ballet flats

+

 

+



Here is another option (this is similar to what I wore today!):

red t-shirt + chambray shirt + black & white striped skirt + gold wedges


+


+



+



When I go to Minnesota this summer, I will be adding some cool-weather wear (since evenings are often chilly), some lakeside wear (including swimming and sitting by the fire options), and more than just these 10 choices.  I will post a list of what I decide to add to this list and will update you on how it works!

I did something similar when I traveled to Minnesota last November, but it was cool-weather wear.  I have never felt so successful at packing for a trip as I did while on that one.  Everything I threw together in the mornings looked put together because it all was engineered to look good together no matter how I put it together.  I don't know why this idea hasn't struck me before - maybe because it takes a little more forethought?  Or maybe because it requires more careful purchasing?  

Happy almost Friday!

Just Kittens

This post is going to be completely cute - NO COLONS!

Stephen likes to hang out in the canvas bag!





Lookit!  His hair got all messed up because
he was squiggling around inside the bag!


The kittens like boxes, so when we got a new box of wet food, I left the empty box on the floor so they could play in it.  Later in the day, I looked for Allistair and found him napping contentedly upside-down in the box. 



He also likes sleeping in soda boxes!

Or using Baltazar as a pillow!

Just for a treat, I thought I would show you this beautiful pine tree in our yard.
The sap is dripping out, and it's extra viscous, so it isn't moving much.
I think it's cool!


See?  Just as I promised, a colon-free post!

Colon Colon Colon

Just thought I would use the title of this post to get you used to the subject matter (and to alert you in case you wish to skip this post!)

I also am posting pictures of MY colon.  I promise they are not gross.

All of these look normal to the naked eye except for the upper right one,
which shows colitis: it looks like a rash


here's a close-up
"hepatic flexure" = an intestinal turn near the liver


I talked with my Gastroenterologist (Dr. R) this morning, and 
everything is more complicated than I expected.  

He told us that immediately after the procedure that I had areas of "apparent colitis," and that he took a bunch of  biopsies to find out why those areas were inflamed.  
There are a few new things he discovered from the pathology report.

#1:  Even though he was only able to visually identify a few areas of what looked like mild inflammation during the procedure, there is inflammation along the whole length of my colon, some of it only visible at the microscopic level.  Eek!  He said that whatever process is causing this is changing the "architecture" of the colon.  That is a weird doctor-y way to phrase it, but I looked it up and it means that the mucous-producing walls of my intestines aren't able to do their job because they're wounded somehow, so my digestive system is not operating at peak efficiency.

So far it is not certain what is causing the inflammation.

#2:  It is possible that the inflammation is related to endometriosis affecting my colon from the outside (because the endometriosis implants would be on the outside wall of the colon, they wouldn't be visible from the inside during a colonoscopy).

#3:  However, because the inflammation is diffuse (throughout my entire colon as opposed to only in particular spots, which would be called "focal lesions"), he believes that the problem is "primary to the colon" (e.g. colon-related rather than a result of something outside the colon).  
He suspects Crohn's Disease.  This was completely unexpected.  It was not on my radar at all.  




He has ordered a specialized blood test called the IBD sgi Diagnostic test, but it needs to be drawn in a specialty lab, and the four labs I have called so far don't do it.  Next I will call the Prometheus company themselves to find out who in my area can draw the blood.  

This lab test shows "genetic and inflammation markers to help differentiate inflammatory bowel disease (IBD) versus non-irritable bowel disease and Crohn's Disease versus Ulcerative Colitis".  So it will presumably say one of the following:

"Yes, you have an IBD and it is Crohn's"
or
"Yes, you have an IBD and it is Ulcerative Colitis"
or 
"No, you do not have an IBD".


Irritable Bowel SYNDROME, by the way, is a separate animal from the two main forms of INFLAMMATORY bowel disease (Crohn's Disease and Ulcerative Colitis).  
Irritable Bowel Syndrome is characterized by abdominal discomfort and digestive difficulties, but symptoms do not stem from colitis or any other observable problem in the digestive system.  It's pretty much what they "diagnose" when you have digestive difficulties and they rule out the other reasons that might be the case.



This is all weird, because I don't have many of the symptoms of Crohn's.  
I guess I have a good portion of them, but I always thought they were caused by other things (like gluten intolerance or endometriosis!)

I should probably add that it's possible that my endometriosis is NOT back, after all, but that I have been dealing with a Crohn's flare-up instead.  The symptoms are surprisingly similar.

I am currently waiting for a return phone call from Dr. H.'s nurse (Dr. H. is the pelvic pain specialist I saw a few months ago).  The Gastroenterologist said it would be helpful to be able to see the colon from the outside as well as from the inside, and the only way to do that is via laparoscopy (small camera through an incision in the belly button).
I would like to know what Dr. H. thinks about that.

I have an appointment tomorrow morning with my original gynecologist, Dr. M.  He retired soon after my hysterectomy in 2002.  He now works for the Women's Center of a very highly respected hospital in Phoenix.  After Dr. H. suggested I wait as long as possible to have any surgery in spite of suspected intestinal involvement, I thought it might be a good idea to get a second opinion.  I am nervous about anything growing anywhere near my intestines and I don't think it's wise to just leave it alone without knowing what it's doing.  So I thought I would ask someone who has a lot of experience and knows my history.  

So there you have it - another leg of an interesting journey!

Next post - kitten cuteness and no more colons!!!

Wednesday, May 15, 2013

Gerbera and Rose


My lovely generous parents sent me a huge bouquet of beautiful flowers after my procedure yesterday!
Look at that yellow rose!

And then there are the Gerbera daisies - 


They are some of my favorites because they're sturdy, cheerful, and colorful 
(some of the things I want to be - ha!)!
Thanks, Dad & Mom - you are thoughtful and sweet and encouraging.  xo

And now you are lucky enough to get to watch the Saga of the Soda Box!  Starring Allistair & Stephen:

Scene I
video

Scene II
video

Intermission

Scene III
video

Ha!  They are very entertaining!

I'm feeling pretty normal today, except I am still really tired.  
I am thankful to have slept about 11 hours last night; it was lovely!

I will be calling my regular doctor to get some blood work done to find out if there's something that we can work on (vitamins, minerals, iron, thyroid).  
I really don't want today to be a rest/slow day, but it may be one anyway.

Enjoy your Wednesday!

Tuesday, May 14, 2013

I did it!


What did I do, you ask?

Did I get assaulted by a giant squid?
Was a mauled by a vacuum cleaner? 
Did I have a bad experience with a suction cup?

These marks are from the heart-rate monitor adhesive!  I share my mother's sensitive skin.


I did it! - I had a colonoscopy!  
A few areas were biopsied, and we won't know about those for a few days.  
Doctor said they looked like colitis of some kind (that's just like a rash on the inside of the colon), but he doesn't know why.  The analysis might tell us.

I have been resting all day after we got home, watching movies and reading.  I am HAPPY not to have to drink any more of the gross preparation solution.  I used the easiest version (Gatorate + Miralax) and it still made me throw up some of it.  The doctor called in a prescription anti-nausea medication so I could continue.  I'm thankful for that; it made the second half MUCH easier.

The cats have enjoyed a day of snuggles!
Baltazar


Allistair


Allistair's cute little nosey!

And when I looked on my camera, there were some funny videos I haven't posted yet.  I am posting the videos directly to the blog, and underneath is the YouTube link for those of you who don't have flash on your devices.  


Masses of cuteness
video


A beautiful breezy day (listen closely and you can hear the fountain gurgling and the birds singing!)
video


Allistair loving on the blankie
video


Claude is venturing out of the master bedroom more often now and isn't quite as grumpy about the kittens living here.  Good girl, Claudie!
video


Stephen found a silly game to play with an upside-down bowl!
video


I look forward to SLEEPING tonight instead of spending the whole night engaged in not-so-pleasant bathroom activities.  Thanks for the prayers and encouragement!