It’s been a pretty eventful month in my life. Apart from my main diagnosis of the neurological condition cervical dystonia, I’ve had some distressing gastrointestinal symptoms for several months which made me wonder if it was something more than the irritable bowel syndrome I’ve lived with for years. You can read the whole story here.
“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.”
― Elizabeth Edwards
My Chronic Life
Shot relief finally kicked in. The Xeomin shots I get for dystonia usually take full effect a couple of weeks after injection, and then I have a nice break from the relentless muscle spasm.
Getting suddenly diagnosed with ulcerative colitis has meant making some big lifestyle changes in a hurry. Knowing what I already did about the GAPS diet, I jumped right in in the hopes of avoiding any extreme drug or surgical methods. I’ve definitely seen an improvement in just a few weeks but at the doctor’s recommendation, I am going to take a two week course of steroids.
I’m really encouraged by online conversations that many people experience improvement from IBD with holistic measures. I was already a medical marijuana patient for muscle spasm relief, but it also helps with reducing inflammation from the IBD. I was kind of spacing it out to lower the cost, but now with all this going on I’m going to take it as directed.
One possible explanation for the ulcerative diagnosis is that I’m about half Eastern European/Ashkenazi Jewish descent. Our population is about four times more likely to get ulcerative colitis.
Got a skin recheck at the allergist’s office. Five years of getting shots and my back was still blown up. Still, there is marked improvement and notably my dog allergy is just a trace one now. Cats are going to take a while longer. My asthma is also better controlled, and I haven’t had much in the way of the usual spring allergy symptoms so it’s been a good investment of my time.
My Self Care Routine
I’ve had to eliminate Leslie Sansone & Yoga With Adriene for now. I still have some GI pains and don’t want to push too hard. I love Healthy Moving to teach me how to build strength and endurance into my daily activities. Spoonie Yoga has been a great way to keep up my yoga practice with gentle yoga routines.
I love the Calm app for daily meditation. I have ADD and an insane monkey mind that never stops. I’ve seen a distinct difference in the way I handle stress by doing this most days.
Using Creativity to Cope With Chronic Illness
A very long time ago I found a lot of escape from a difficult childhood by getting lost in the art that I loved to create. But when I was around 14, I tried to get into a specialized high school and didn’t make it. That was also around the time my life choices became questionable and I stopped making art in favor of self destructing.
Decades later, my kids are growing up and I’m looking around at the art books and supplies I was always drawn to but never had time for. I feel like I’ve lost everything and am starting from scratch.
As a blogger and virtual assistant, I spend so much time writing, learning marketing and tech stuff that I really need to step away from it when I can and just do something with my hands. I’m keeping it very simple for now with coloring pages.
Special Needs Parenting While Chronically Ill
I’ve been homeschooling since 1996. My older kids had the benefit of having a mom who was physically able to run all over central Florida for various field trips and activities. My younger kids who have special needs didn’t have this, and it makes me sad because they needed it even more. It’s been really hard watching the other parents who are able to do everything while I get wiped out from just one afternoon out!
My homeschooling journey is coming to an end in May. My thoughts are a whole other blog post, but I’m looking forward to a new season in my life with hopefully a little more freedom, flexibility and creativity.
I’m running on very limited fumes right now and have to plan my daughter’s graduation events. Trying not to worry about what the future holds for her and my son. Ulcerative colitis is a potentially very scary situation with kids who completely depend on you but I’ve got to pray and trust in God’s provision for the situation that he’s allowed.
My Faith Journey With Chronic Illness
I’m continuing on with She Reads Truth. It’s become my go-to devotional. It’s doable and always very relevant to my life. I’ve fallen behind on my Bible Reading plan (this always seems to happen around spring, when life gets busy and I’ve started Leviticus) but I’m giving myself grace to pick it up again when I’m not so tired. I also like to do some scripture writing and color in my Bible.
To add to all of this, I think I’m finally experiencing the beginnings of menopause (I’m a late bloomer!) So far, the hot flashes have been barely noticeable. Guess I’m hoping that my very holistic lifestyle will minimize the worst of it, but I also have to be realistic.
We may not be fearless
but we will be *strong*
because our *faith in You*
is greater than the fears in us.
And that might just be the best news we’ve heard:
lay all those fears & worries to rest in Him.
Credit: Ann Voskamp