Showing posts with label #tbitempquilt. Show all posts
Showing posts with label #tbitempquilt. Show all posts

Tuesday, January 21, 2020

Quilt #137 :: Year 15 (TBI Temperature Quilt)


Hi friends! I had grand plans to write a big long blog post today to reveal my first finish of the year, and a very personal one at that. I am very happy to announce that my epic 2019 quilt chronicling my 15th year as a brain injury survivor is finished!

I actually finished it on the 11th, just in time to submit it to a local quilt show. Woo hoo! Bucket list itemed crossed off! Because I only had 10 days to finish the quilt after making the last block on January 1--including hand sewing the binding and sleeve...and learning how to hand bind and make the sleeve...and starting it the day before the quilt was due...I didn't have time or brain power to take a good picture of the finished quilt. 

However, in a few weeks, I will get to see my quilt hung in a real live quilt show and you can bet I will be taking lots of pictures hung up while it's on display. 

I have much more to say, but my brain is still not playing well with my words after all the December craziness, so it will have to wait. In the meantime, I wanted to share my quilt today because it is my brain-aversary today! My brain injury is sweet sixteen!

This is what I shared on Facebook today:


My brain injury is 16 years old today! Sometimes I miss my pre-TBI life. I’d like to be able to drive whenever and wherever I want. I’d like to be able to trust my brain to keep up when I’m in public or in situations that trigger my symptoms. I’d like to be able to make plans without caveats. I wish I was able to have written more books. I wish I could make more memories. I wish I could avoid my crashes and headaches and vertigo and blurry vision and fatigue. But, mostly I am grateful. I have a husband who loves and advocates for me. I have a son who challenges and inspires me. I have friends who accept my flakiness and welcome my spontaneous invitations. My mom lives with us and shares her silly pup with us. We have a beautiful home with a long table and comfortable guest room. I have discovered quilting, which gives me an outlet for creativity and generosity. I am happy and content.



So, please come back again to hear more about this quilt, see pictures of the show, and discover what I learned about (still) living with a brain injury. 

**Updated 6/2/2020**

My goodness! What a year it's been! My brain completely pooped out for about 6 weeks after I finished this quilt. I just couldn't shake the cobwebs and spent most of 6 weeks in bed. I finally started feeling better at the end of February and the COVID hit. Fortunately, our family has stayed well, but my sew-jo has been lacking as adjusted to having everyone home all day, supervising D's on learning, and so much cleaning.

But I'm back and hoping that our summer at home will be just the stability I need to get back into the quilting swing of things.

My TBI quilt was accepted into the quilt show and it was quite a thrill to see it among so many quilt.






Linked to:

Posted by Jen @ de Jong Dream House at 8:18 PM 2 comments
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Tuesday, July 2, 2019

One Monthly Goal :: July 2019


Summer is officially upon us and we are officially moved into the de Jong Lake House. There is chaos everywhere because it is impossible to unpack when the kitchen, mudroom, pantry, and laundry room are all being renovated! We are making do with a crockpot, secondhand microwave, and far too much eating out, but we are a few weeks away from being able to enjoy our upgrades. 

Speaking of upgrades, I no longer have a craft room, I have a sewing studio! The previous owners used the 29' x 28' space as a play room, but I claimed it as my play room, which I am naming Vesper View Studio. 

This is how it looked on closing day.


The big change we made was to replace the carpet with cork.


Then we changed the yellow stripes to Vesper Violet. 


Finally, we changed the yellow can lights to bright daylight tiles.


Then, I moved all my stuff in. My room suddenly doesn't seem so big!


I've been focused on the renovations upstairs, as well as dealing with brain injury crashes, so I haven't been able to spend a lot of time getting things sorted downstairs. I'm not ambitious enough to make an organized sewing studio my One Monthly Goal!

Instead, my goal is to catch up on my TBI Temperature Quilt. This is the quilt I'm making this year to document my 15th year of living with a brain injury.


I haven't sewn any blocks for nearly a month! I do have a pretty good idea of when my crashes are because of my Fit Bit, and I can also use my summaries to tell when I napped. We are headed to the Netherlands to see my in-laws at the end of the month, so I have a bit of a fire under my backside to catch up before then!

I'm hoping, too, that by working on a little project, it will give me the push I need to find my rulers and figure out a good arrangement for everything. Maybe my August OMG will be to have my sewing studio ready for (virtual) tours and (real life) visitors!

To see more pictures of my progress, check out #VesperViewStudio on Instagram. If you want to see our upstairs renovations, look for #deJongLakeHouse. To see what I'm currently working on, follow me at deJongDreamHouse.

Linked to:
Elm Street Quilts

Previous OMGs

Posted by Jen @ de Jong Dream House at 9:51 PM 2 comments
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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)

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

Monday:
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


Thursday:


Posted by Jen @ de Jong Dream House at 11:43 PM 15 comments
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Wednesday, March 6, 2019

TBI Temperature Quilt :: February 2019 Update


I've decided that unless if I have something special to add or share, I'm going to make updates on a monthly basis. As you can see, February got off to a pretty rough start. 


Truth be told, it ended on a rough note, too. 


For the first time in years, I had two crashes in one month. What is a crash, you ask? Every brain injury is different, so let me tell you what it means for me. A crash is a way of explaining what happens when my brain is overwhelmed with too much sensory input. It can happen slowly over a day without enough rest or quiet. Or it can happen suddenly when I find myself bombarded by too many or much stimulation. One of the limitations I face with my brain injury is that I have a hard time filtering sounds and noises. For example, in a restaurant, I hear a lot of sounds at the same level. I hear the sounds of conversations around me, clanging in the kitchen, music over the speaker, chairs shuffling across the floor, silverware clanging, etc. at roughly the same level. It's really hard for my brain to keep up and I will get cognitively exhausted. It's like when you run and swim for a long time. You start strong but tire as you go on. 


When my brain is flooded, it responds by shutting down the things that aren't essential. So things like vision and speech start to fade. Even on a good day, I have a hard time holding focus because my optic nerve and brain don't play well together. When I'm flooded, my vision is jarring, as my eyes are like a camera trying to focus out a moving car. I can't hold a clear gaze, so I'll often close my eyes to avoid the vertigo this process causes. My ability to communicate also shuts down. First, my words will be slow and quite possibly be incorrect as aphasia kicks it. For example, I might say cigar when I mean guitar. If I'm not removed from the stressful situation, my words will start to slur, like I'm drunk. After that, I can't speak at all. 


I'm very lucky to have people around me who recognize when I'm flooding. They know that it's essential that I get to someplace dark and quiet so I can sleep it off. But sometimes, it doesn't happen fast enough. 

The first time it happened this month, my son had a snow day. Some friends decided we would take the kids to a movie. I can't usually handle movies without problem because it's dark and there aren't any distractions other the movie. I do have issues when there are things like the strobe lights in The Incredibles 2. After the movie, we went to a restaurant. Again, on its own, I'm okay with going out to eat, but it does take a toll trying to tune out all the sounds. Being with a group was extra taxing because I was trying to listen to multiple conversations and was focused on making sure my son was on his best behavior on the other side of the table. At this point, I recognized that I was starting to feel symptomatic, or flooded. I should have called it a day. But my son had private swim lessons and I had already canceled the week before. I did ask my friend to drive us to the Y. Indoor pools are a nightmare on even the best days because of the way sound echos. I can't make out anything. Usually, I watch from the lobby, but my son asked me to watch from inside. I should have said no. By the time his lesson ended, I was in bad shape. My son is 10 and has seen me crash, so he knows what to do. I both love and hate that he has that knowledge. I was slumped over in the lobby trying to block everything out. He ran to my friend and said, "Mom needs to get home NOW." By the time, my friend and her two sons got to me, I was non-communicative. My friend had seen me crash, but her kids had not. It was a little scary for them, but definitely gave them a lesson they won't forget about brain injuries. My friend drove me home and got me in bed safely. After a couple of days, my brain was reset and I was fine. I kick myself because it could have been avoided if I would just done one of those things, and not all three. 


The second crash was a different story. It was one of those rare situations where I am immediately speechless. My husband planned a date for us to see comedian Tim Hawkins. We saw him a few years ago and had a great time. He does parody songs as part of his act, so he came out with his guitar and sang. Hilarious. Because my vision has worsened since the last time we saw him, Niels bought the pricey tickets so we could be closer to the stage. It was a great idea, until Tim came out with strobe lights and sound at more than 100 decibels.


I was immediately disoriented and crashing fast. Friends from the venue moved us to the sound room but it was too late. I was done. 

A few days later, Niels and I bought a movie on demand and watched in the quiet of our home. As much as I love the idea of going out with my husband. Movies at home are more my speed!

On the other end of the spectrum, I did have two great days in February. I clarified my definitely of great for the purpose of this quilt. In order for a day to be great, it means that
  • I was out of bed before 10:30
  • I sewed for at least 4 hours
  • I didn't take a nap
  • I cooked dinner for my family. 
In other words, I was able to spend a good amount of time quilting in addition to taking care of my family, rather than "instead of." I try to make a homecooked meal every night and we do make eating together a priority. But sometimes we have leftovers, sometimes Niels cooks or we make a pizza, and sometimes we eat out. 

In February I had my first two travel days. I got to see my long-time besties at our annual girls weekend.


I'm so I recovered from my first crash in time to enjoy the company of my friends. I picked out a purple and gray print to use on days when I travel and am away from my sewing machine.


We've started to make plans for our summer trip to the Netherlands to see Niels' family. It's guaranteed that in those three weeks, I will have at least a few days. I decided that I would add gray or purple circles to indicate in general terms how I feel that day. I won't sew, so they arrow will point down, but the purple or gray will convey if I'm able to participate with the family or need a down day.


I printed the circles on fabric backed with Steam a Seam. When I travel, I will bring my temperature squares, travel rectangles, and these circles. I will do the applique when I get home, but with the Steam a Seam, the circles will stay put. 

The biggest hiccup I had this month was the realization that I lost one of my fat quarters and was not going to have enough for the year.


Fortunately, I only had to go back and redo 11 blocks.


Looking at my half square triangles, February looked like this.


These blocks really show the effect of my TBI on my ability to work a full time, 8-5, as I did before my brain injury. In February, I would have been able to work 2 days (the top row + the empty row). Yikes.


Here are the numbers for the year.
I
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)

Friday

Posted by Jen @ de Jong Dream House at 11:18 AM 8 comments
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Sunday, February 3, 2019

TBI Quilt :: January Update


Hello February! My yearlong TBI temperature is already 1/12th done! This is going fast!

Now that we are in month two, I have put all of my January blocks together. If you are new to my project, I am chronicling my 15th year of living with a brain injury.  Each day, I am making a block to visually show how my brain injury affects me in one specific way--my ability to quilt. The wings of each block refer to the daily high and low temperature outside. Purple geese pointing up mean that I am able to quilt, gray geese pointing down mean that my headache, fogginess, fatigue, or other symptoms keep me from sewing. The darker the color, the more extreme my sense of well-being. Dark purple = a great day. Dark gray = I didn't get out of bed.


My goal in making this quilt is to give a visual representation of what it's like to live with a brain injury. I have lots of experience telling others what it is like, but seeing me experience my symptoms is much more impactful for those who don't know much about brain injury. Just this week I experienced a crash at our local YMCA (fortunately I was with a friend who could drive me home, but I'm sure I'll have to explain it the next time I'm there).


Also in January, I finished the top of my Good Fortune mystery quilt. In one of the clues, designer Bonnie Hunter shared that by making an extra line of stitches with my flying geese, I could make extra HSTs for later use.


This turned out to be a great idea because even I was startled to see how clearly it shows the breakdown of my days. 


I think that many of us on disability feel guilty at times. Even though SSA disability is a program we in the US pay into with every paycheck, there is a sense that disability means an all day, everyday debilitating condition. And it can be. A blind person doesn't get a break from being blind, which is why blindness is a condition that gets fast-tracked for approval. For other conditions, like brain injury, the challenge is that one's ability to function can vary wildly depending on exposure to triggers, and the daily exposure to those triggers are cumulative, meaning that our body's response to them are more severe and longer lasting. For me, things like stress, deadlines, driving, crowds, bright lights, multi-tasking, etc. contribute to my need for rest and the likelihood that I will crash--become so overwhelmed that my body shuts down.

I can't quite put into words what it felt like to see my days so starkly. I was shocked. I felt both affirmed and saddened by the reality. 

Near the end of the month, I made this realization. As of the 25th of January, I would have only been able to work a regular day 4 times!


I'm not exactly sure how I'm going to use these HSTs. I'm leaning toward using them in the border, but we'll see if I get another idea. I would like to submit this quilt for a show, so I won't be able to use them on the back if I want them to be part of the educational aspect. So for now, I'm put them together and have them in my project box.


As far as the main quilt, I've made a few tweaks as I got started but I think I have a good system going now. I had to make some rules for consistency. For example, if I don't get out of bed until after 10:30am, I'm counting that as a nap day, regardless of whether or not I take another nap that day. If the only sewing I do on a day is my temp quilt block, that won't count as a sewing day. Also, if I experience a crash, like I did last week at Y, it's a dark grey day, regardless of whether I sewed earlier in the day or not.

 I use little black strips to denote weekends, and thicker black strips to separate the months. For visual interest, I am adding black blocks at the beginning and end of the month rows so that each row technically begins with Sunday, not the 1st.  (I just realized I need to add the black block to the end of January).


TBI Tally, as of January 31:

Previous Posts:
Introduction
Week 2 Update
A Husband's Perspective (Niels reflects on the 15th anniversary of my TBI)
Week 3 Update (my brain-aversary)

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)

Monday
Posted by Jen @ de Jong Dream House at 8:17 PM 8 comments
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