Glimmers in the Darkness

May continued to be a difficult month. My scleroderma has had further progression. The tightness extending down my legs further well into my knees then up into my pelvis and abdomen more. It’s also beginning to affect my swallowing and causing some skin break down.

In 2 days I’ll finally be at my full dose of mycophenolate, my new drug to hopefully help my scleroderma. This drug works very slowly. Every personal story I’ve found where this med helped, it was 6 months to a year after reaching full dosage before results were seen. So I still have a long wait. If we are to see positive results it may be next winter into next summer before I see anything.

My dr and I made some pain med switches this month too that has helped me physically and mentally feel better. An answer to prayer. With the switch my most intense hot prickly, nothing helps, skin feelings are gone as is my nausea. Allowing me to completely eliminate my anti-nausea meds. This has all intern led to better sleep and not feeling so intensely sad and overwhelmed. PTL!

For great is your love, reaching to the heavens; your faithfulness reaches to the skies.
Psalms 57:10 NIV

I have an appointment with my rheumatologist on June 22nd. Hoping for some diagnoses details then.

I start my 12th cycle of Ibrance on Monday. Thankful this cancer med is working, praying it continues to work. My next CT will be late July.

We are thankful for some nice weather for a beach day, gardens to grow and being outside more.

Our sweet pony is feeling better. Only occasionally needing some pain meds but no longer daily.

Stairs are really hard for me to manage, especially without a rail. Our crumbling concrete front steps got a beautiful make over this week thanks to hubby and oldest son! Thank you!❤️

We have pretty much wrapped up our school year, math and reading will continue throughout the summer. We didn’t complete all of the book work we’d hoped too but the enormous amount of practical and life skills our children have learned this year is immeasurable.

For great is your love, higher than the heavens; your faithfulness reaches to the skies.
Psalms 108:4 NIV

When I share my blogs, many ask how they can be helping our family. Thank you for asking, thank you for caring. Our day to day life is pretty much set and routine for us now with our handful of helpers, which we love and appreciate so much, couldn’t do this life without you. What we do need is continued prayer for healing, for day to day life, for willing open hearts. Another blessing is those that, just out of the blue, drop us off a meal or treat for the kids. Thank you so much. Even though we are able to manage daily meals, a surprise meal gives me a mental break and our children a physical break. It is so appreciated.

Please continue in prayer for healing, especially that this med, mycophenolate, will work and not be taken in vain and for continued patience and hope in the hard, in the waiting.

Do not withhold your mercy from me, Lord; may your love and faithfulness always protect me.
Psalms 40:11 NIV