I woke today in shock at the fire in my body. CRPS feels like burning lighter fluid filling and swelling every artery in your body. Muscles pulsate to electric vibrations you cannot find the source of. Shaking and weakness, fatigue and fire. The brush of a sheet sending terror to the brain and back down.
Pain formerly unspeakable.
So many hurting people. So much pain...sigh.
But.
If I stay giving weather reports of my pain to a diary or loved one, it prolongs the day and 2718 days later that gets a little boring for everyone. Its not life. Its not living. Besides, it's Thursday!
I Am healing. I know JOY in suffering. I KNOW peace.
Gratitude fills me to the top of my head and down through my body and out of my toes. Inhale the gratitude, exhale the joy. I used to hide in pain.
I would only emerge into public when I could appear "normal" ( whatever that is). I missed the love. I was looking down. Afraid to speak about my suffering and to appear negative, and also in fear of unsolicited advice or judgment, I grew detached. I was silent. Fear kept me from the compassion that was waiting. I felt intermittent joy in moments but was not fully freed to express it in my heart. I was looking sideways.
Matthew wrote on my legs to help hospital staff Understand
Today I look up. When I look down or sideways there is no lasting relief !
I look up and my body responds. I am filled with peace and comfort...and joy.
I will express that joy through the pain and this fire...It better watch out. Fire recede! Stand back. It is Thursday and my Joy is on the loose. Nothing can stop it.
Photo taken by a 3year old dressing me up at garage sale.
Joy is multiplied when shared with a friend!
I will sing at the top of my lungs...wherever I am: In my house or quietly at the hospital...to the song only I can hear in my head. "Come to Me, You're Not Alone. "
I have learned to expect the unpredictable and look for the unprecedented.
What's in store? I don't know. But I am looking up and its got to be good. It's only 8:00am! Thursday, its a gift to be unwrapped. A blank page. The beauty is in the surprise for me. I believe Good things are on their way. To me. For me. And For You.
Comfort beyond explanation or imagination WILL hit and take my breath away.
Like right now.
Deep breath.
Exhale.
Today I might see a hummingbird. Or finally catch that blue woodpecker outside my window on Instagram. Thursday, we got this. I am handing the reigns to upstairs.
Pain is unpredictable. Tears will come at night.
But joy... Joy always comes in the morning.
Simply eloquent. Thank You! And bless you too... <3
ReplyDeleteThank you so much for being.here with me!
DeleteKaitlyn - I think you should ask your doctors about a stimulator implant - it helped my daughter's pain level go from a "15" off the charts to about a 3-4. She is now walking to her classes at college and rarely ever has to use her scooter to get around. Her name is Carla Whitlow and she lives in Amarillo, TX, if you are interested in contacting her.
ReplyDeleteThank you for writing! I was not a good candidate for the SCS but I have many people in my facebook groups who have had varying degrees of.success. I am so glad she has found it helpful. I will look for her online and invite her to our group!
Deletei have RSD too, and i love your positive attitude!
ReplyDeleteThank you so much! Please join our Facebook group Peace in Pain-30 Days and the RSD Livingroom Virtual Support. Lots of wonderful people like yourself in a unique environment.
DeleteI also have CRPS and have a stimulator implanted in my spine it helped for the first year and that was it,t.he pain came back with vengeance.I have had every procedure you can imagine to help me with the pain recently one of my doctors wanted me to have the ketamine infusion that requires you to be in ICU for a week while they infuse large amounts of this drug into you..After thinking about my life and how much I suffer everyday I decided not to do it I thought it could kill me and living is better than taking that chance.I admire they way you deal with your CRPS it is a lot like the way I do my best friend is ice I find it helps more than any drug can I wish you the best and hope you have many days ahead of you in less pain stay strong xoxo..
ReplyDeleteCarole, thank you for your kind words! Please know you are wecome to join my facebook group also, Peace in Pain and the RSD Living Room. I had amazing.results from ketamine but each person must be a peace with what procedure is right for them. Ice is known to cause nerve damage and exacerbate RSD/CRPS although I know in my early months.I relied on it. Im curious if you read the research on ice from RSDSA? Www.rsds.org
DeleteIt is my experience that no matter what I do, treatment wise, it does not have to define my progress and my outlook. My fears can deceive me;). But, I do advocate for good and correct reports and.being informed. What a dance! Hope is stronger than reality. Hope to see you on facebook!
Thank you for your wonderful spirit. My dear husband has RSD that has debilitate him severely. I pray that God will bless him with the spirit of praisre that you have receive. I pray for that same spirit also.
ReplyDeleteHow blessed he is to have your love! Join me on facebook in the group Peace in Pain. Also, there are men getting together on virtual call weekly. Wednesday evenings 8pm EST. They each have RSD. I will continue to pray for you and your husband. You do not have to journey alone.
DeleteI absolutely adore this, it describes how I live too. You've got across the reality of what you're dealing with as well as the true joys that you experience. Fantastic post hon, 5 stars and a hug from me :-)
ReplyDeleteI've only just discovered your blog but it's now 'favourited' :-D xxx
Thank you!! I love your name! Hilarious! Send me some of your faves too;) Always love inspiration. :D
DeleteI am new to this forum and would love some advice. I have been diagnosed with fibromyalgia since 1992. I have auto-immune issues with having thyroid issues as well. Taking this into consideration, I was thinking that I would NOT be a good candidate to have a Morton's Neuroma removed. Those of you who may not be familiar, it's a pinched nerve in my foot that has scar tissue from the constant irritation of the two bones that pinch and rub against it when I walk, thus making it feel like a hundred bees stinging me on my foot when I walk. Anyway... it's a nerve and once snipped out, I would have two loose ends just dangling and not have a connection. Do you think it could possibly cause me to contract RSD? I surely don't want to go from the frying pan into the fire! God bless you guys!!!!
ReplyDeleteHave you considered vitamin C? It is an excellent preventative. Research online and check it out. Going into any procedure with fear is not helpful of course, but practicing being in the moment and grateful for the provision you have is a good anti-dote to fear. My sister-in-law deals with Mortons too, and did not get RSD from surgery. But we talked about it.
ReplyDeleteIt is more likely statistic -wise you will get in an autoaccident , but life is too short for that worry. It is natural however for you to wonder: will this get worse? I will write soon on this topic.
Join us on Facebook in the Peace in Pain group. Lets walk together.
I am happy to report I am experiencing 80% pain relief now... life is transitioning. I will be posting a few updates and link to my other blog. Thank you for your support!
ReplyDelete