Maybe it’s all this sunshine I’ve been getting. Maybe it’s just a season of life. Maybe it’s actual change. That’d be the best!
We were recently told that we were not accepted to see anyone at the Lucinda Bateman clinic in Utah. We were hoping that they could offer a supplemental diagnosis that could explain and treat the pain I am having, the walking issues, the leg and hip stiffness. If the record reviewers don’t think they can offer you anymore help – diagnosis, prescription, or otherwise-they won’t even see you.
My MS diagnosis is a wonky one and it’s hard to explain and discuss.
I cried hard and big after I got the call that I was rejected. The denial by the clinic took away a breath of hope I had. Hope that life could be different and that maybe I wouldn’t have to change my life because of deteriorating health problems that could be treated. The doctor here suggested the Mayo Clinic, again.
I need time to recover and think, so I have hesitated to consent. I have been too busy living to want to deal with a lot of things that need to be dealt with. I thought I would have time this summer to filter through everything and offer a more thoughtful real estate brochure for the sale of my flower shop and have a complete package to present the potential buyer. Um… dude.
For starters, July was busier at the shop than I have had in the recent five years, if not, ever. It is supposed to be the slow time, the time to rest and recover and explore the Northwest geocaching with my crew. We went out and did a few things, but were overwhelmed with business, otherwise.
The good ole Lord must be carrying me through this chaos, the normal Dana would be falling apart. Believe me, there are moments. But, I am not living there, somehow. I firmly believe this will be a chapter of my life that I look back and see one set of footprints. God has to be involved in this.
In all honesty, I feel pretty crappy physically. I feel like I am suffering minute by minute. You never know what part of your body you will be dealing with today or next week. Last week the right side of my neck and head hurt immensely. Pain and burning I felt on the outside of my head. Almost like a force, only from the inside out. I felt like a freak. A hypochondriac, right? It was so stupid sounding, I couldn’t even call the doctor to discuss. Just tried to medicate it away. It is hard. Instead of a pillow, it feels like a 2×4 under your neck. In addition to the normal stuff in my legs, arms, shoulders, and back.
This week I am having trouble with the left side of my neck. Sitting down is miserable. The aching and cramping kick in. It’s either stay moving, stay medicated, or sleep. And, severe leg pain wakes me up hourly throughout the night. I can’t look up or at anything for a long period of time. I am pretty sure my kidneys hurt from all the ibuprofen and tylenol and baclofen and caffeine.
I have devised a small plan of attack go forward.
I’ve reached out to my neurologist to have one last blood test ordered here at the local place. It’s the last funky test that I’ve had. If that is negative, then I really truly have some totally wackadoo presentation of MS. If it is as positive as it was before, or greater, I know I am onto something and I will pursue the nation’s foremost authority on SPS at Johns Hopkins in Maryland.
In the meantime, delegation has become a new “area of growth” of mine. Passing on my tasks to both of my employees. Trying to regularly give them more details to keep so I don’t have to. Going to start looking to hire someone to fill the cooler regularly and also fill in when I’m not able. Freedom. I’ve really been enjoying the time I have at home and with my kids and family. This is surprising and good to me. Doesn’t that sound awful? I think it’s because it’s been sitting around really *with* each other, playing a game, working on the yard together, and setting a different pace of life. My kids desperately need me to see them right now.
I’ve been learning to love people as they are, as Jesus would, not as they should be. It’s so liberating and brings so much joy. It is not as easy as it sounds. An amazing soul once told me that we all the ability to love perfectly. I thought he was asinine. It’s true. He was right. We love perfectly when we love as Christ.
I’ve been doing a lot of listening while I work. Scripture, Brene Brown, music, John Piper. My brain is literally aching at all the interweaving of relevant learning God implements into our lives as we seek Him, seek more, and desire to be the best versions of ourselves He created.
Learning about self talk, self worth, and continuing to present the best light I have forward no matter how hard the darkness tugs. And does it tug. Daily, hourly, always persistent to bring on shame, fear, guilt, worthlessness.
It is no coincidence that the combined lessons God culminated for me recently involve learning where my worth comes from, whose opinion really matters to me, and how to identify, combat, and diminish the pain in a healthier way. Of course it will take me a bit to figure it all out. I am learning to be okay with it being a slower process than I had hoped. I am learning to be okay with mistakes. Learning to look at myself with love, a tiny bit.
I am excited to pursue being the best human being I can be with the commission to endure a unique suffering in chronic illness, domestic violence, PTSD, depression, and anxiety. Getting comfortable with writing my book, for reals! Like, really putting a piece of me out there to be judged and examined and scoured. It is terrifying and it needs to be done. If I don’t allow the light of Christ to shine through my suffering, it would be for nothing.
There are hard days and hard moments when I forget my goal. I take my eyes off the prize, completely consumed by all the busy-ness of life, the family, the shop, drama, problems, and overwhelming pressure to keep going despite physical pain. It is these times I crumble big, take long breaks, and often rely on those who love me most to lift me back up.
I am thankful for the chance to share my story. I am thankful for the opportunity to have a safe place to write, breathe, feel, and share just what I need. Exhale.