Relief…Hope…Maybe.

I have tried so hard to remain hopeful this past year…..my hope in Jesus does not waiver but my hope to feel better, my hope in living life somewhat normally again, my hope to not be in pain….I struggle deeply with, every day.

With my symptoms progressing so rapidly, seeing definite weekly if not daily decline in my abilities it get’s more difficult to keep the roots of discouragement from sinking deeper all the time.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10 NIV

I did see a rheumatologist, Dr. Elana Murphy and her resident Kristina Roche last week at the Nova Scotia Rehabilitation Clinic. They were kind and extremely thorough, my appointment was over 2 hours. What is happening to me is extremely rare, not seen very often so successfully treating it is difficult without studies to show proven results. She offered two possible medications to try but needed to consult with the rest of my medical team to ensure the compatibility with everything I take now. They also want further bloodwork to try and pinpoint my diagnoses, some will be send to an Alberta lab for special testing.

I just received the call back from the rheumatologist that their first choice of meds is in fact safe to proceed with so I will be starting Mycophenolate. This med works slowly, taking 6-12 months is not uncommon before seeing any effects. 😔 If it works at all. It is also an immunosuppressant, like one of my current cancer meds so an extremely close eye on my bloodwork is required and any sign of infections taken seriously.

I’ve also had an OT appointment this week to work on ROM in my hands. Not sure that I can regain function but this will hopefully allow progression to stop or slow.

https://open.spotify.com/track/76UQFZtK8p9OC1FqHh38ha?si=GlUxfQsIQZyPEUDBM-MYOA&utm_source=copy-link

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9 NIV

Amid the continued discouraging struggles, celebrating Easter without C restrictions was a deep breath of fresh air. Being together in church on Friday, remembering Jesus’ sacrifice and on Sunday to celebrate His resurrection was beautiful.

Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead,
1 Peter 1:3 NIV

Even though I was unable to join them, the kids were loved on again with two fun Easter egg hunts and an Easter scavenger hike. Then we all enjoyed pizzas on the smoker together on Monday, a full weekend of fun.

In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
Romans 8:26 NIV

Please pray that discouragement would be kicked to the curb!

Please pray that this new med will work miraculously or God will open other doors if it’s not meant to work!

Please pray that my Monday Zometa infusion would not knock me down but do as it’s supposed too, heal and strengthen my bones!