Frontier Culture Museum Family Day

My Sweet Fella

Brittany walked over to where Joshy was petting the little sheep and
casually leaned over to TOUCH the ANIMAL.  Yes, it's true.
"Ohh!  It's sooo soft" 

Brit helped the boys "Old School" style with pieces of metal and slates.

My pretty little Abby.  She's growing up so quickly and looking
like her big sisters more and more each day.

Samuel grabbed it,
already figuring in his mind
how he was going to handle it. 
My little Paul Bunyan

"In all this Job sinned not"

God's timing amazes me...as I am reading through my Bible everyday, I find that God gives me exactly what I need for each day.  Not too many days ago, I sat on my bed, warm steamy coffee in hand and my Bible on my lap...  This has been my morning routine since I can't remember. 

With me being sick, my husband has played a great part in this: The alarm usually goes off at about 6am.  The smell of fresh coffee brewing has already filled the house with it's "best part of waking up" aroma.  My dear, sweet husband, makes his way into the kitchen to fill my favorite cup and grabs my medicine.  He usually walks into the bedroom, scooting my little Romeo off of the bed (Romeo is my ever-devoted kitty) and helps me out of bed with a warm hug and kiss as I stand to my feet.  "Here's your medicine, sweety."
"Thank you. Good morning." Is my usual reply as I sip my hot coffee and down a hand full of pills.  (Brittany is amazed at my ability to swallow so many pills at once.  I don't even have to wiggle my toes or jump up and down to help them make their way in like some 5 foot 3 inch people! ) :)

I make use of the time it takes for my pain medicine to kick in and sit on the bed doing my morning devotions...which is where I began this little story of mine...

Not too many days ago, I sat on my bed, warm steamy coffee in hand and my Bible on my lap... 
I had been reading through my Bible and on the previous day finished up the book of Esther.  (I love reading the book of Esther, although I can't help but to play it out in my mind like the movie, "One Night With the King".  I love that movie and it suits me just fine to let my mind wonder this way.) So, I turn the page and what do I find?  My next assignment is .... JOB.  (Ahh, thanks Lord! I don't know if I want this lesson.)  In the past, I have read the book of Job and wondered at Job's distress and not really understanding his response.

My first new insight was that Job was emotional and grieved.  

But, "In all this Job sinned not, nor charged God foolishly." Job 1:22 

You see this was such a revelation for me!  I have had so many moments of grief and tears. I began to feel guilty, like I was being so unspiritual for struggling with what I was going through. 

I mean REALLY!  How can a mother look into the face of her sweet little dimpled seven year old and think that she may not be there to help him grow up? Or watch her girls sit on the end of her bed, talking, laughing and being silly and think she may not be there to hold their first child?  There are so many aspects to dealing with a life-threatening disease.  It can be so overwhelming at times. 
 So, you grieve, and cry and even question your struggles.

But, "In all this Job sinned not, nor charged God foolishly." Job 1:22 

You mean to tell me, "It's okay to grieve and cry and struggle?" 

That, "My tears don't mean that I'm unspiritual?"

How LIBERATING that truth was!

And so, I am really enjoying my study through the book of Job. 

God is teaching me so much and ministering to my spirit in so many wonderful ways.

This morning has been no different!  

This was what God had for me today:

"Wherefore hast thou afflicted thy servant?"
Numbers 11:11

Our heavenly Father sends us frequent troubles to try our faith. If our faith be worth anything, it will stand the test. Gilt is afraid of fire, but gold is not: the paste gem dreads to be touched by the diamond, but the true jewel fears no test. It is a poor faith which can only trust God when friends are true, the body full of health, and the business profitable; but that is true faith which holds by the Lord's faithfulness when friends are gone, when the body is sick, when spirits are depressed, and the light of our Father's countenance is hidden. A faith which can say, in the direst trouble, "Though he slay me, yet will I trust in him," is heaven-born faith. The Lord afflicts his servants to glorify himself, for he is greatly glorified in the graces of his people, which are his own handiwork. When "tribulation worketh patience; and patience, experience; and experience, hope," the Lord is honoured by these growing virtues. We should never know the music of the harp if the strings were left untouched; nor enjoy the juice of the grape if it were not trodden in the winepress; nor discover the sweet perfume of cinnamon if it were not pressed and beaten; nor feel the warmth of fire if the coals were not utterly consumed. The wisdom and power of the great Workman are discovered by the trials through which his vessels of mercy are permitted to pass. Present afflictions tend also to heighten future joy. There must be shades in the picture to bring out the beauty of the lights. Could we be so supremely blessed in heaven, if we had not known the curse of sin and the sorrow of earth? Will not peace be sweeter after conflict, and rest more welcome after toil? Will not the recollection of past sufferings enhance the bliss of the glorified? There are many other comfortable answers to the question with which we opened our brief meditation, let us muse upon it all day long.

White Coats & High Hopes

White Coats & High Hopes

So, here I sit in one of the best hospitals in the country

(and likely the world) and what is the prevailing thought? 

 "Life is so disposable."        Or better yet... It is but a vapor.

 There are hundreds of people sitting here in the waiting room to get help for whatever ails them and the first stop is blood work.  Walk up to the counter, "Hilton Building, Desk C" and you are greeted by a smiling, cheerful face.  "Wow" I think to myself.  After all, it's 8am, I'm nervous because I don't know what lies before me, I'm probably patient number 473 this morning alone and this is a welcoming stop on my journey.  Perhaps this is just a really sweet lady!

Blood work done.  Onward to my next appointment.  As we tunnel our way through the underground walkways (aka "subways") toward the main lobby, I feel like I'm entering a beautiful hotel lobby with 40 foot ceilings, marble floors, beautiful art and a pleasant grand piano filling the air with lovely music.

 "Shall we just sit here, drink in the atmosphere and lose ourselves in the music?"  Ahh, no- we didn't travel close to a thousand miles for atmosphere!  I mean it could look like a sanitarium and it wouldn't matter if they did what I needed done!

Appointment after appointment, that lady from the "Hilton Building, Desk C" must have sent her sisters to take care of me because they were ALL so sweet and lovely.  I'm not joking, even the men were pleasant.  We must be on another planet!  Are we still in America?  And "Up North" for goodness sakes!  Everybody knows that "all Northerners are rude." (At least that's what our mamas told us)

No, no, we were in the right place but they must have one of those Wal-Mart kind of morning "pep rallies" before the doors open at 6am for patients, to get everyone motivated and happy. 

                          ************

With all of that being said, I hope I have set the atmosphere quite perfectly for you.  I ended up in "The" Liver Specialist's office by Wednesday.  The bulk of tests had been done and it was time for some serious observation.  We sat and talked with him as he sorted files, read records, asked questions and made notes.  He was a pleasant man, relaxed, calculated and very knowledgeable.  After examining me, it was time for us to ask questions.  We had many fears- my doctors at UVA helped us to understand how serious my condition was, no doubt so that we would handle it seriously and follow their treatment plan.  I had Stage 3 Liver Disease.  They wanted to, "save my liver" and avoid the need for a transplant.  Along with this, we had been studying up on this disease and knew allot of the "Ins and outs" from our reading.

So, what did he say?

He did confirm that I have both PBC (Primary Biliary Cirrhosis) and AIH (Autoimmune Hepatitis). 

They have ordered the actual tissue samples from my last two biopsies and will have them looked at by Mayo.  (He didn't see the point in taking another biopsy)  He believes that with a little different approach, as far as my medicine goes, we can get to the place that we can manage these diseases and the damage they are having on my liver. There are no dietary changes that will aid in managing the effects of this disease on my liver.  I don't need to worry about a transplant: 25 years ago PBC was the leading reason for a liver transplant but with the advancement of medicine and treatment options, it is rare for a PBC patient to need a transplant (even at Stage 4).

Long term, things look good for me.  I will still have the difficulty of day-to-day pain and fatigue from the disease. Over the next week, I have a series of appointments with the chronic pain clinic which will help me with managing my pain through medicine and lifestyle management. (like the physical therapy I am currently doing)

All in all, we are so encouraged!  We are truly rejoicing in The Lord and are THANKFUL for the LIFE He has given me.

Why Mayo?

So why can't I just stay in Virginia and get my treatment at UVA?

After much prodding from my husband, I put in a request with the Mayo Clinic in Minnesota.  Within four days, they contacted me with an appointment.  My first thought was, "We don't have a dime to do this".  With tears streaming down my face and the phone still by my ear, my husband told me that God would provide...

Well, he was right- God provided!  He has provided the way, a place to stay and a car to drive. 
Without a doubt, I KNOW that God wants me here!

Why choose Mayo Clinic

• Experience. Mayo Clinic is one of the leading treatment centers for primary biliary cirrhosis in the United States. You benefit from the experience of primary biliary cirrhosis specialists who treat hundreds of people each year.
• Research advances. You have access to the latest diagnosis and treatment advances at Mayo Clinic, which has been conducting research on primary biliary cirrhosis for more than 40 years. Mayo Clinic researchers have studied many treatments for primary biliary cirrhosis and have made significant contributions to understanding its cause, including finding two gene variations that seem to predispose people to primary biliary cirrhosis. This discovery is the first step toward developing targeted treatments and a cure.
• Excellence in liver transplants. Mayo Clinic has performed more than 4,500 liver transplants and has some of the highest transplant survival rates in the world. People with primary biliary cirrhosis who receive transplants have particularly high survival rates.
• Team approach. Liver specialists, radiologists, pathologists and surgeons work together as a team to provide comprehensive and coordinated care for people with primary biliary cirrhosis.

What Aileth Thee?

I have had alot of people asking questions about what I have. 

What do I have?
Primary Biliary Cirrhosis (PBC)

What is it?
Primary biliary cirrhosis is a disease in which the bile ducts in your liver are slowly destroyed. Bile, a fluid produced in your liver, is essential for the proper digestion of fats. It also helps rid your body of worn-out red blood cells, cholesterol and toxins. In primary biliary cirrhosis, the destruction of your bile ducts can cause harmful substances to build up in your liver and sometimes lead to irreversible scarring of liver tissue (cirrhosis).
The cause of primary biliary cirrhosis remains unclear.  Many experts consider primary biliary cirrhosis an autoimmune disease in which the body turns against its own cells, although it's likely that genetic and environmental factors also play a part. Primary biliary cirrhosis develops slowly. Medication can slow the progression of the disease, especially if treatment begins early

What does the disease do to your body?
The problems in primary biliary cirrhosis begin with inflammation in the smallest ducts in your liver. In time, the inflammation spreads to and destroys nearby liver cells. As these cells are destroyed, they're replaced by scar tissue (fibrosis). Over a period of years, the combination of ongoing inflammation, scarring and toxicity from trapped bile can lead to cirrhosis. Cirrhosis involves irreversible scarring of liver tissue that makes it impossible for your liver to carry out essential functions.
The inflammation begins when T lymphocytes (T cells) begin accumulating in your liver. T cells are white blood cells that are part of your immune system response. Normally, T cells recognize and help defend against bacteria and fungi. But in primary biliary cirrhosis, the T cells invade and destroy the cells lining the small bile ducts. The T cells also produce chemicals that stimulate liver cells to secrete proteins that attract more T cells, thereby creating an ongoing cycle of damage.
Researchers suspect that a genetic susceptibility coupled with an environmental trigger, such as infection, may be at the root of this abnormal immune response:

• Genetics. Primary biliary cirrhosis seems to run in families, and scientists believe that some people may inherit certain immune system defects that make them more susceptible to the disorder. Research has identified three genetic variations associated with primary biliary cirrhosis. This finding may eventually help researchers narrow in on the cause of primary biliary cirrhosis.
• Infection. For decades, researchers have suspected that primary biliary cirrhosis might result from a bacterial, fungal or parasitic infection, which would explain the massing of T cells in the small bile ducts. Some women reported having urinary tract infections, primarily those caused by the Escherichia coli bacterium, prior to the development of primary biliary cirrhosis. However, no commonplace infections have yet been consistently linked to primary biliary cirrhosis.

What are the complications?
As liver damage progresses, people with primary biliary cirrhosis may develop a number of serious problems, including:

• Cirrhosis. The term "primary biliary cirrhosis" isn't entirely accurate because cirrhosis develops only in the later stages of the disease — often many years after diagnosis. Yet when it does occur, cirrhosis can be life-threatening because it interferes with your liver's ability to carry out essential functions. Cases of primary biliary cirrhosis are divided into four stages. The first stage — inflammation of the bile ducts — is the least serious, and stage 4 — cirrhosis — the most serious. Ongoing cirrhosis can lead to liver failure, which occurs when your liver is no longer able to function.
• Increased pressure in the portal vein (portal hypertension). Blood from your intestine, spleen and pancreas enters your liver through a large blood vessel called the portal vein. When scar tissue blocks normal circulation through your liver, blood backs up, much like water behind a dam, leading to increased pressure within the vein. And because blood doesn't flow normally through your liver, hormones, drugs and other toxins aren't filtered properly before entering your bloodstream.
• Enlarged veins (varices). When circulation through the portal vein is slowed or blocked, blood may back up into other veins — mainly those in your stomach and esophagus. The blood vessels are thin walled, and increased pressure in your veins can cause bleeding in your upper stomach or esophagus. This bleeding is a life-threatening emergency that requires immediate medical care.
• Liver cancer. The destruction of healthy liver tissue that occurs in cirrhosis increases your risk of liver cancer.
• Weak bones (osteoporosis). Liver scarring interferes with your liver's ability to process vitamin D and calcium, both of which are essential for bone growth and health. As a result, weak, brittle bones and bone loss may be complications of late-stage primary biliary cirrhosis, and your doctor may order a bone density test to look for osteoporosis.
• Vitamin deficiencies. A lack of bile affects the absorption of fats and of the fat-soluble vitamins, A, D, E and K. This sometimes leads to deficiencies of these vitamins in advanced cases of primary biliary cirrhosis.
• Cognitive impairment. Some people with primary biliary cirrhosis have problems with memory and concentration. Cognitive difficulties don't seem to correlate directly to the amount of liver damage, however.

Treating the disease
Treatments aimed at slowing the disease and prolonging life include:

• Ursodeoxycholic acid (UDCA). Also known as ursodiol (Actigall), UDCA is a bile acid that helps move bile through your liver. Although UDCA doesn't cure primary biliary cirrhosis, it may prolong life if started early in the disease and is commonly considered the first line of therapy. It's less likely to help people with advanced liver damage. Side effects of UDCA may include weight gain, hair loss and diarrhea.
• Other drugs. Sometimes other drugs are used off-label or in clinical trials to treat primary biliary cirrhosis, but many have proved to have serious side effects or haven't been effective. For example, some studies show that the drug methotrexate, which is normally used to treat arthritis, psoriasis and some types of cancer, isn't helpful in primary biliary cirrhosis, whereas others show it to be somewhat effective.
• Liver transplant. When treatments no longer control primary biliary cirrhosis and the liver begins to fail, a liver transplant may help prolong life. People with primary biliary cirrhosis who have liver transplants often do very well, although the disease may recur in the new liver.

My life is but a weaving ..

My life is but a weaving
Between my God and me.
I may choose the colors
But He knows what they should be.

For He can view the pattern
Upon the upper side
While I see it….
Only on the underside.

Sometimes He weaveth sorrow
Which seemeth strange to me
But I will trust His judgment
And work on faithfully.

Tis He who fills the shuttle
For He knows what is best
And I shall weave in earnest
And leave with Him the rest.

At last when life has ended
With Him I shall abide
Then I may view the pattern
Upon the other side.

Then I shall know the reason why
Pain with joy entwined
Was woven in the fabric of life
That God designed.
The shuttles of His purpose move
To carry out His own design;
Seek not too soon to disapprove
His work, nor yet assign
Dark motives, when, with silent tread,
You view some somber fold;
For lo, within each darker thread
There twines a thread of gold.

Spin cheerfully,
Not tearfully,
He knows the way you plod; Spin carefully,
Spin prayerfully,
But leave the thread with God.

The Mountain Top by Abigail Miller