Saturday, April 13, 2019

TBI Temperature Quilt :: March 2019

March was a crazy month. Clearly, I'm still recovering from it since I'm only now getting around to sharing my month's progress on my TBI quilt.

Even though I had a fair amount of down arrow dates, the good news is that I didn't sew on most of those days because a BIG project kept me out of the craft room, not a headache. (Details coming soon, though you may have an idea if you follow me on Instagram).  

I started the month at the neurologist for my regularly scheduled Botox injections. Before I got approved for Botox, my headaches would have me in bed up to 25 days a month. Now I only have about 5 bed days a month. The frustrating thing is that even though Botox is one of the most effective ways for brain injury survivors to get ahead of headache pain, because it can also be used for cosmetic purposes, insurance companies want to make absolutely sure that no other treatment would work. As a result, it took me three years of recovery and therapy after my brain injury, then another four years of trying every other medicine and treatment available (except for when I was pregnant and nursing), before I was allowed to try Botox. The last thing I tried before Botox was a two-day cocktail of chemicals similar to what cancer fighters are given for pain. Not only did it knock me out of commission for a few days, it didn't touch the pain. 

When I finally started Botox in 2012, it gave me my life back. 

I started the month with my schedule injection. Dr. Casanova has been my primary neurologist for the last five years, after my former neurologist moved away. We are both hamming it up a bit in this picture. The injections pinch, but don't really hurt, at least, they are nothing compared the headaches they help keep in check. 

I brought in my first two month's progress to show the staff. 

It was interesting to show to the dedicated folks who work in the office. It was a great visual tool to show that being brain injured (or disabled in other ways) doesn't mean that every day is a bad day. And it was cool for me to show them how the creative I lost as a writer has come back through quilting.

I marked my March 1 block with a syringe. 

I used the same thread painting technique I learned when making Mrs. Miller's Steinway quilt. This time I remembered to put some interfacing on the back to stabilize it.

With March being complete, I am already 1/4 of the day done with this yearlong project. 

Here's a look at how the month looks in summary. I had 12 bad days and 19 good days. And sadly, no travel days. When I take the weekend days away from the good days when I didn't nap (5+6 on the card below), I ended up with four days that I could have worked my previous office job.

Here are the numbers for the year.

TBI Tally, as of February 28:

Previous Posts:
A Husband's Perspective (Niels reflects on the 15th anniversary of my TBI)

Follow along with the progress of this quilt on Instagram at #TBITempQuilt. I'd love the encouragement to keep me working on the rough days! You can use the hashtag #tempquiltalong to see what other quilters are doing for their temperature quilts. To see what I'm currently working on, follow me at deJongDreamHouse.

Linked to:
Temp Quilt Along  @ Twiddle Tails (click here to see other temperature quilts)

BOMs Away @ What a Hoot! Oh Scrap! @ Quilting is More Fun Than Housework

Design Wall Monday @ Small Quilts and Doll Quilts
Monday Making @ Love Laugh Quilt
Moving It Forward @ Em's Scrap Bag
What I Made Monday @ Pretty Piney


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  1. Bonus points for more good days than bad!!

  2. Love the visual your quilt gives of your life with TBI. It makes it so real to those of us who don't have to struggle with TBIs aftermath.

    1. I'm surprised by how much I'm learning about myself, too!

  3. I'm so happy you finally found a way to feel better! It'a a little surprisng that Botox can be used for other things than cosmetics.
    Interesting temperature quilt, as these months are just crazy ;)

  4. This quilt does tell quite the tale of your daily life. Thank you for sharing this and persisting in your beautiful quilting.

  5. Oh, man, that's discouraging to hear how difficult it is to get insurance to authorize botox treatment. What a terrible set of flaming hoops you had to go through! Do you have to periodically defend its efficacy to your company, or is it a stable authorization by now? I bet the staff loved seeing the quilt record. It's creative and beautiful.

    1. I have to get it approved again each year, but fortunately, my neuro has been a great advocate for me with both my insurance company and Social Security.

  6. My niece has been saved by botox injections for her migraines too! I'm sorry it took both of you so long to be able to find a bit of peace from the peace.

    1. I understand why insurance companies are hesitant, but it certainly adds a lot more stress than we need!

  7. I love that you're sharing your work with the medical professionals who help you. It must be incredibly gratifying for them to have a visual representation of your progress. Thanks for linking up to What I Made Monday!

  8. Though it took awhile, I'm glad that now you can get Botox, it's working wonderfully - yeah!

  9. It is really frustrating when the people who need the medications can't get it paid for until they go above and beyond to prove they need it. You'd think just having the trauma would be enough to prove that it would qualify for insurance coverage. I'm glad you are able to get them now though!

  10. Sorry for such a bad month, but as you say there are still good days. Thank goodness for that! Keep smiling, keep fighting. You're making progress even if it's slow. Thanks for sharing your journey on Wednesday Wait Loss.

  11. This is such a cool project. I'm happy dancing that you have had more good days than bad. It's crazy that insurance companies make you go through all of that, instead of just giving patients what they know they need. I'm glad you were able to finally get the treatment that is making life easier for you. Please keep sharing your progress! I'm enjoying these posts so much.

  12. Wow, I didn't know about this amazing use for botox. Thanks for sharing.


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