WARNING: This is Not a happy post...

I'm trying to remain positive, but having MS is really getting old!  So, if you came here today looking for something cheery... well, you may want to move along, right now, to some happy decorating/cooking/gardening type blog, because I'm getting "beat up" by MS again, and I have to talk about it!

I have been in a downward spiral for some time now.  The pain in my lower back and legs was unresponsive to medications, but now that pain has gone.  Instead, I have lost feeling in the lower back and most of both legs.  My left eye is again swollen, vision blurred, and is being treated with steroid drops.

They (the great "they" of the medical world) are offering me Gilenya.  A disease modifying drug, which also happens to have death, heart problems, loss of vision, compromised immune system, etc., to it's short list of "side effects" and I don't have the time, or the stomach, to read any more...

Pray you say?  Yes, I have done that, and also have many friends and family praying for me.  Awesome!  But, God does not always choose to heal people.  Even really nice folks like me.  I can accept that... sort of.  I do believe He loves and understands me... I never doubt that!

Where to go now?  What to do?  Say "NO" to this drug, and live with the certainty that this disease will continue to tear my brain and my body apart?  Say "Yes" and take the risk of leaving my family way before my time... or going blind, which steals my favorite activities from me.  Choices.  Choices.  I do not like these choices, but after this brief "pity party" I will dry my eyes, put my "happy face" back on, and try to pretend that life would never give us way more than we can handle.  I'll be back soon, hopefully with a big attitude adjustment and a more optimistic view of life.  Till then, be well dear friends!

Pushing Through the Pain...

It's been a while since I shared much about my journey with MS.  The last three weeks have been very difficult physically.  I had to swallow my pride and have my husband put my walker back in the car, in order for me to even leave the house.  It's been a long time since I had to use a walker.  The timing has been difficult, because we've been on the countdown toward my youngest son leaving the nest.  Move-in day at college is this Saturday!  I had plans for joyful shopping trips and last minute fun moments together, but this recent attack on my body made it nearly impossible.  A few days ago, I had to be placed on a heart monitor for 24 hours, and they took an ultrasound of my heart... no results yet, though I'm fairly certain they will decide it was something called an MS "hug" that I was experiencing.  They increased my pain medication, added steroids and muscle relaxants...  The results were that my face and neck swelled up night before last, and I woke in the wee hours of the morning fighting for air.  This is apparently from the steroids.  I'm feeling much more myself today, although I will still be using my walker and/or canes for the time being.

When I'm tempted to let the "dark days" take over, I have to remind myself how blessed I am.

~ I have family and friends who love me, and pray for me.
~ I'm still able to do many things I love.
~ There are those much worse off than I am.
~ I'm one of the fortunate ones with a good health insurance.

I have a faith that sustains me, even on days when I just want to sit and cry like a small child.  When those days come, and they do, I can find my way out of the darkness because of that faith.

It also helps to read about what others are facing in their lives, and how they deal with it.  I've shared many times about Baby Gabe, and his journey.  Here is a link to an uplifting blog I just discovered.  The writer is Jenn, and she shares about Gabe's birthday balloon release, and about her own journey with an invisible illness.  I think it will bless you, it certainly blessed me...  Her blog is called Chasing Joy.  Then, take just a moment to read Julia's Happy Birthday post for little Gabe, here at The Four of Us.  It is beautiful!

Well, my youngest just walked into the house... time to get busy on that list of things we want to fit into the next two days!  Wishing you a day filled with love and simple joys...






 

If Life Has Hurt You...

Pause the Playlist before starting the video...

This speaks to those moments when you feel there's been too much pain, too many disappointments, those you counted on let you down, you've faced unbearable loss, your world came crashing down...  Whatever the sorrow... maybe something good will come from it... maybe He still loves and cares... if you can keep on trusting... if you just Believe.