As the Waves of the Ocean

It's so easy to stand on the beach and watch the waves roll against the sand...

how beautiful and relaxing it may be. 

But, when you stand amid the waves, trying to gain a footing, if there for hours, you may find it frustrating at the wrestling with the tide.

This is a good picture of how life has been for me for...hmmm, well ...a good long time.  I feel as if I am out there in the sea, not simply in a boat that's rocking to and fro in the midst of the storm, but rather within the waves, struggling to catch my breath, to gain a footing, to get some respite.

Uhhh, it's a very difficult battle I have been fighting, mostly within.   Each day, there is a battle that rages.  Will I give into this disease or fight? Fight! Ah yes, this is what I want to do but often, I become weary in this battle.  But, really! what other choice do I have but to struggle and fight?  You see, if I were alone on this earth, I could very well, pick a spot on the map, and live as a recluse and just give in. 

BUT, God has given me a family, a purpose on this green planet, and for that simple reason, I have to fight!  I have six children to raise up for the Lord.  I must try, ever so intently, to help them to be what God desires them to be.  I must give them the tools, practically to be a godly wife, a good parent and spiritually to be a strong Christian.  My efforts, truly are flawed but my prayer is that God will give grace and that He will make up for my many short-comings and faults.

What will this result be?  I really can't tell.  Oh, I can imagine these wonderful dreams of my girls being wonderful wives and godly mothers, my boys being strong men that will hold fast in THE faith, loving their wives with delight and valuing their relationships with their children but only God knows what the future holds.  It is up to me and what I do with THIS DAY that is before me.  To hold eternity in view, to die to self and selfish desires, to fight with all of my being, all that would threaten God's best in their lives. 

And so THIS day, I choose to fight, to face these storms with all that I am.  And when there is nothing left in me to fight, then fight some more, to be strong in the Lord and the power of HIS might.

"I Know Who Holds Tomorrow"

I don't know about tomorrow,

I just live from day to day.

I don't borrow from its sunshine

'Cause the skies might turn to grey.

I don't worry about the future,

'Cause I know what Jesus said,

And today I'll walk beside him

'Cause he's knows what lies ahead.

Many things about tomorrow

 I don't seem to understand

But I know who holds tomorrow

And I know who holds my hand.

Every step is getting brighter

As the golden stairs I climb.

Every burden is getting lighter

All the clouds are silver lined.

Over there the sun is always shining

And no tears will dim the eye

And the ending of the rainbow

Where the mountains, they touch the sky.

Many things about tomorrow

I don't seem to understand

But I know who holds tomorrow

And I know who holds my hand.

Yes I know who holds my hand.

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.

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.