Official Diagnoses

So I not only have Stage IV Metastatic Breast Cancer but have been officially diagnosed with Scleroderma. My bloodwork that had been sent to Alberta came back with several of the antibodies testing highly positive. This was not a surprise at all but to have the official diagnoses hurts and is scary. June is Scleroderma awareness month. Since it is a fairly rare disease I thought I’d share some details.

My Scleroderma is systemic, systemic sclerosis (SS) is an autoimmune disorder that causes atypical growth of connective tissues. Connective tissue gives your tissues (organs and muscles) strength and shape. With SS, your tissue becomes thick and stiff, leading to swelling and pain. It also causes changes to the texture and appearance of your skin due to increased collagen production. Collagen is a component of connective tissue and hardens with this disease.

SS causes an immune response that destroys healthy tissue as an autoimmune disease because your body’s immune system mistakenly thinks your tissue is a foreign substance or infection. You then see fibrosis or scar tissue, also described as connective tissue growth, in response to a perceived injury or damage.

But the disorder isn’t confined to skin changes. It can affect your:

• blood vessels
• muscles
• heart
• digestive system
• lungs
• kidneys

The symptoms and severity of the disorder vary from one person to another based on the systems and organs involved.

Skin

It is very common to experience hardening and tightening of patches of your skin with SS. The patches may be oval-shaped or a straight line that can cover large areas of your skin. Your skin may also appear shiny since it’s so tight with your movement restricted.

Fingers and toes

Raynaud’s phenomenon results from limited cutaneous systemic scleroderma. Here, you will see small blood vessels in your fingers and toes start to constrict or shrink, in response to cold temperatures or certain emotions. As a result, your fingers and toes may become painful, turn blue, or go numb.

Digestive system

SS affects all or some parts of your digestive tract. If the esophagus is involved, you may experience heartburn or swallowing difficulty. Your intestines may also be affected. In that case, you may experience:

• cramps
• bloating
• diarrhea
• constipation

In your intestines, your body absorbs the nutrients it needs to function. So if your muscles are not working correctly to digest your food, you may experience nutritional deficiencies as a result.

Heart, lungs, and kidneys

SS may affect other organs, including your heart, lungs, and kidneys. When the disease process reaches this point, it may become life threatening without early treatment.

Scleroderma renal crisis is a rare but severe complication of SS that remains a significant risk factor for the life threatening progression of the disease. However, a 2016 study mentioned that it only affects 2.4 to 5% of people who receive a diagnosis of SS.

Potential complications of systemic sclerosis

Some people with SS experience a progression of their symptoms. As a result complications can occur, which include the following:

• gastroparesis
• gastroesophageal reflux disease (GERD)
• hiatal hernia
• Barret’s esophagus
• intestinal obstruction
• pulmonary hypertension
• high blood pressure
• transient ischemic attack (TIA) and stroke
• arthritis
• myositis
• heart disease
• irregular heartbeat
• pericarditis
• scleroderma renal crisis

So where do I fit in all this?! About 90% of my skin is now affected, all of my joints are affected, my esophagus is tighening, affecting swallowing, my intestinal tract is affected jumping between constipation and diarrhea as it chooses on any given day, I now have several skin ulcers that require cleaning and dressing, my hands are often painfully cold, my toes are often bluish, I still have times of intense, hot prickly itching that nothing calms. Trying so desperately to take one day at a time.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6:34 NIV

This disease has been far worse than all my experiences with cancer, it has taken so much from me. Moments of fear and sadness often hit. Not sure if because cancer is more familiar and predictable to me, making it less scary and overwhelming in the face of scleroderma.

When I am afraid, I put my trust in you.
Psalms 56:3 NIV

God continues to carry us through each day. We continue to pray my scleroderma medication will stop this progression. We continue to pray that my cancer meds will keep working as well as they are. I just completed cycle 12 of Ibrance.

And my God will meet all your needs according to the riches of his glory in Christ Jesus.
Philippians 4:19 NIV

Through it all we strive to continue to live life. It’s slower, it’s less but still a blessing I’m thankful for.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,
Ephesians 3:20 NIV

Loved seeing this beauty on her special day!

We have enjoyed homeschool group at the church, lighthouse and beach.

Celebrated our precious granddaughter’s first birthday!

Family suppers, campfires, Father’s Day and strawberry picking with big sis.

Grace and peace be yours in abundance through the knowledge of God and of Jesus our Lord.
2 Peter 1:2 NIV