Category Archives: Living with Multiple Sclerosis

This is My Memory on MS

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Most of the time, my short- and long-term memory is out of whack.  I remember some of the oddest things (like the one suit a former professor wore for special occasions) and at other times, I have to ask someone to repeat what I had said just five minutes ago.  Then there’s the times that I open my mouth and stick my foot in it way up to my knee because I have said something that “I” seem to remember, but the person I’m saying it to adamantly denies it ever happened.

This is my memory on MS:

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Actually, that’s my entire brain on MS because half of most days I spend with such dizziness that I cannot walk, talk or think straight.

Be that as it may, what I say is not easily forgiven by the person I’ve said it to … and I’m afraid that is the case recently.  I said something I *thought* I remembered, but was told I was wrong, plain wrong.

What is most amazing is that I usually have some issues trying to talk at all – I can’t get the words from my brain through my mouth.  I start to say something and forget what I was talking about – my train derails.  It’s frustrating, embarrassing and it bothers the heck out of me.  Only option I can see to help it is to either talk more (which will wear me out) or talk less.

Frustrated memory while having MS.

A Quilted Memorial for George Ann

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A very dear friend lost her very short battle with leukemia a couple of nights ago.  She was admitted to the hospital the first week of June and never made it out.  My quilted heart definitely has another seam added to it.

George Ann and I met at our local quilt group meetings.  Her mother had been coming for some time but George Ann didn’t really take to quilting until she retired from her job a few years ago.  Once she was hooked, it was all over but the sewing!

George Ann went with me to spread some quilted cheer to a retreat that Kathryn Rister had near Abilene, Texas last April.  I’m pretty sure we acted like a couple of teenagers, talking the entire way up and back.  We instantly found a friendship and it grew from there.

She saw beauty in nature just as much as she saw beauty in living and in people.  On our way to the retreat, we had to stop by the side of the road to take some photos of a stunning bluebonnet patch of flowers:

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The state flower of Texas, bluebonnets!

George Ann (on left) and Kathryn Rister at a Quilt Retreat.

I am guessing that anyone who came into contact with George Ann found a friend in her.  She was so very likeable and loveable!  And her love of God and all of His creation was so deeply embedded in her heart.  We talked of Bible verses as much as we did about each others’ lives, families and our love of quilting.

On the quilting front, she picked up on it like she’d been doing it her whole life.  She occasionally asked me questions but her momma and at least one of her sisters quilted, too, so I’m sure they helped her way more than I did.  I taught George Ann how to make string quilts and she absolutely LOVED the idea and asked me to start saving my strings for her.  To this day, I still have a “George Ann Strings” bag near my cutting table:

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Saving strings for George Ann.

I took a photo of the quilt I was working on last night, I realized I had just witnessed another God moment – I was making a baby quilt out of Texas A&M fabric and George Ann had (at some point over the last couple of years) told me that they were ‘partial to the Aggies’.

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When I sent out a plea at Christmas to any of my local friends, asking the to help me trim our Christmas tree – George Ann and her momma were at my doorstep (along with a lovely neighbor) within the hour – even though they had more pressing things on their agenda, a friend is a friend and she was all that and a bolt of fabric!

I also uncovered my super-secret angel on Earth.  Ever since my MS diagnosis, I have received an anonymous card with $20 in it, in the mail at the beginning of each month.  Without fail.  And it always came at a time when I needed it most – for gas in the auto, medications, money for the kids, etc.  This month, I did not receive a card…which opened my eyes to the fact that my super-secret angel on Earth is now an Angel in His heavenly Kingdom.

My dear George Ann…I will miss you so very much.  Your zest for life helped she me that my attitude for living with MS could be a positive experience.  Your love of people helped me see how much friends and family are truly the most precious things we have and hold dear, outside our faith and love in our Savior.  Your smile was infectious.  And I will continue to save my strings and selvedges in hopes that I can share a little something with the next quilted heart angel you may send in my direction.

Love without ceasing, pray without ceasing and keep your sewing machine humming in heaven!

Quilt Therapy?

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I reserved this domain name a number of years ago – when fabric was about $6/yd.  For those of you who have been quilting and buying quality quilt fabric, you’ll realize this has been my domain name for quite a while.  In that time, I’ve had non-quilters ask me what Quilt Therapy really was…while seasoned quilters smirk and enjoy their own forms of Quilt Therapy.

And back in those earlier days of my quilting, it was said that Quilt Therapy was less expensive than true therapy.  Right now, with the cost of fabrics, quilting, shipping – I would definitely have to say that if you are a proficient quilter, it is NOT cheaper – though, for me, it is way more satisfying!

Let’s see if I can throw out my own definition of Quilt Therapy for you.

A lovely little baby girl was born to a great set of parents, the baby’s mother I personally knew since my youngest daughter was less than one.  This little baby’s mother was my mother’s helper when I had very young children…and as she grew up and got more responsible, she was our go-to babysitter for our kids.  She took the kids to her house in the summer because I worked from home and needed some quiet time to get my work done.  She and her parents took our kids when my husband had to have an emergency appendectomy…and they took our kids in when a precious life ended far too soon and we had to fly from Utah to Texas to attend her services.  If we were going somewhere and needed an extra set of hands (like to the public swimming pool), she went with us.  She was and still is an awesome person – and we could not have been more pleased when she finally had a baby of her own.  She spent a few years of her marriage with just her husband, because her mom told me that her babysitting my four kids was the best birth control there ever was!  I think they’d been married for about five (or more) years before they had this precious new life in their hearts and in their home.

This new baby calls to me and I begin MY Quilt Therapy.  It can be a long and winding road, especially if I have to rip out a seam or two (or six), but the Quilt Therapy gives me such a blast of fresh quilted air that I enjoy every single process of making a quilt.

I am not as expedient nor able to quilt quite as much as I used to – with this multiple sclerosis, I can usually get in 15 – 30 minutes, on my feet (choosing or buying fabric, cutting, ironing, etc.) most days before my body parts start screaming for relief.  So now, when I make a quilt, I spend however many hours or days it takes to cut out the quilt pieces.  Then I rest.  Another few days and I will press all of the cut out pieces.  Then I rest.  Sitting down to piece a quilt top is pretty simple, and even more simple when it’s a baby quilt because it’s smaller than larger bed quilts.  But, there is ironing involved in that piecing process and once again, I do my piecing in daily/weekly increments so as not to be in too much pain.

So, now I have the quilt top done…however my Quilt Therapy isn’t finished yet!

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This is a photograph of the completed baby quilt top.

Once the top is done, I have to decide if I can quilt it on my domestic machine or if I want a professional quilter to use her long-arm and quilt it for me.  In this case, I decided to go with a pro (Kathryn Rister) – mostly because a baby quilt is usually used a lot and washed a lot and it needs to stand up to the test of time.

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This is a close-up of part of the quilt top quilted.

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Although it’s not easy to see, this is the professionally quilted quilt top.

Next in the Quilt Therapy process is the binding.  Then the label on the back…and sending the completed quilt to the little baby it was intended for.  Not yet!  I’m not quite done with my Quilt Therapy for this quilt.

THIS is the closure I get when I enjoy my Quilt Therapy:

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DISHONEST BUSINESS PRACTICES: Barnes & Noble

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If you’ve been a long-time reader of this blog, you may remember that I won a Nook (first edition) in December of 2010 from our local library’s essay contest.  I also spoke about my Nook and how much of a blessing it was with my newly diagnosed multiple sclerosis (MS) – here and here.

I have spent HUNDREDS of dollars, if not more, to buy eBooks through Barnes & Noble.  I bought my husband a Nook.  A secret Santa bought ALL FOUR of my children Nooks this past Christmas.  I was happily convinced that we were going to be a Nook family.

I was so very happy with my first generation Nook, but I (selfishly and greedily) wanted more.  I earned a bit extra money this past year and my husband agreed that I could get a Nook Color, since I was not only an avid reader but also because it truly was something that helped me cope with the symptoms caused by my MS.  I loved it, especially when I traveled, I didn’t need to take my computer along as I could check my eMail via my Nook Color.  I rarely went anywhere without it and it continued to help me be able to deal with my MS symptoms.

About two weeks ago, my Nook Color went wacky.  That’s about the best term I can use for what happened.  It would not charge fully or even partially charge.  It would switch between screens when unplugged – making itself and me crazy enough that it would just shut down completely.  The only time it worked as it should was when it was plugged in – which truly was not a viable solution for me because I wasn’t always near a plugin.

I had my husband find the receipt for when I purchased it and we took it to the big box office store that we bought it from.  They refused to help me with it, since I did not purchase their extended warranty.

And let me interject here a thought I had just after this happened – if the extended warranty is at least half of the purchase price of a new product, there were OBVIOUSLY more people having trouble with the product.  I didn’t take that as a warning sign until my psycho Nook Color went on a bender.  You can bet I will ask about the price of an extended warranty before we purchase ANY future electronics in the future!

I tried the chat help on the BN.com website, but except for some simple manipulations, they could not help me and referred me to the second tier help with a toll-free number for me to call.

I took the time to call Nook and ask for help on 6/11/2013.  “Roxie” did not speak English very well, which was my first clue that this issue would not be solved to my satisfaction – if I cannot understand a customer service rep, why would I expect her to understand me???  The minute I mentioned the power cord and the inability for my Nook to charge completely, she refused to listen to the rest of my complaints.  I *knew* it was not the power cord, but she insisted on sending me out a new one and asked me to give it three days after receipt to make sure it worked.  I VERY SPECIFICALLY asked if my warranty would be extended because of this issue and she assured me it would.  I asked again, at least once if not twice about my warranty (the original warranty was good until 6/17/2013) and she continued to assure me that she extended the warranty until the issues was resolved.

After three days with the new power cord, the problem was NOT solved and I called the second tier help line again.  This time, I got someone named “Karina” – date was 6/18/2013.  She told me the warranty was NOT extended by “Roxie” so my Nook Color was no longer covered under the original one-year warranty.  This made no sense based on my communications with “Roxie” (who either lied to me or did not understand me) – but she assured me that it had expired.  I nearly blew a gasket – told her EXACTLY what my conversation with “Roxie” entailed and … wait, I DID blow a gasket.  I was so very upset over the whole ordeal (and for those of you who follow my MS life, stress is one of the biggest factors in exacerbating MS symptoms).  “Karina” put me on hold to talk to a supervisor about extending my warranty to cover the issue that had never been resolved.  When she came back on the phone, she informed me she was authorized to send me a NEW (emphasis added) Nook Color and that I should be receiving it within the week.  I had to agree to send the wacky one back on their dime, which I agreed to.  The kicker was that my NEW Nook Color only had a three-month warranty.  Of course, if you think about it, that let them off the hook much sooner.  I had researched problems with this electronic device and could not keep up with all of the issues it was having.  I now knew the product sucked and I was pretty much screwed UNLESS I had purchased the extended warranty from our local office store.

Today, I received my NEW Nook Color in the mail.  When we got home, I opened it – only to find this sticker on the end of it (I did open the box so the torn sticker is by my hand, it did not arrive that way):

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I am sure you can imagine the colorful language I used when I saw that sticker. My NEW Nook Color was, in fact, new to me – but NOT new from Barnes and Noble!  Why in the heck would I want a pre-owned, refurbished machine that probably went wacko like my original one???  And it probably wouldn’t go wacko until long after that lovely three-month warranty ran out.  This is like purchasing a used automobile and finding out after you took it home that it had been in an accident and that information was never disclosed to you.  This NEW Nook Color will promptly be sent back to B & N along with the wacky one.

Is this really how to run a business as big a B&N is?  Is it really necessary to LIE to customers?  I am quite a Pollyanna and had the expectation that the B&N folks would follow through with what they promised me.  Land sakes alive, I am extremely unhappy.  I will read the books I already own and save up my money for a Kindle from Amazon or some other tablet that allows for me to read books.  I adamantly REFUSE to be treated the way Barnes & Noble has treated me.  It is not right.  It is a swift kick in my hind end for my blind trust in all things good and I have purchased the last book from Barnes & Noble unless they right the wrongs with me.  I will just re-read the books I’ve purchased and wait for whatever comes next.

Barnes & Noble, at the very least, you are DISHONEST to at least THIS consumer.  My money will NOT line your coffers anymore – unless you make this right.

To my friends, please feel free to share this blog post and re-tweet it with as many folks as you can.  My bottom line is that my MS symptoms are in jeopardy and my children deserve to have as much of a mother as I can be – and I need an eReader to be that mom because I’m not only allergic to the print in a book, flipping pages in a book or magazine makes my MS act up and I get extremely dizzy.  It’s not just for entertainment anymore.  Not only has Barnes & Noble lied to me, I believe they are just as liable for my deteriorating health these past few stressful weeks.  Unhappy is as nice of a word I can use to show my disdain for being screwed by a big corporation who has forgotten that customer service and customer satisfaction is what continues to grow a business.

The Beauty of an Empty Spool

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I was working on whip-stitching the binding on my table toppers this past week, and emptied a spool of thread.  Mind you, there wasn’t much tread on the spool to begin with but I like to save my nearly-empty spools (that don’t have enough thread to use in my sewing machine) to use for my handwork to finish a quilt project.  I had just enough thread left on a spool to complete sewing the binding to the backing – and there wasn’t a stitch of thread (pun intended) left on the spool and my projects were complete.

I am sure those of you who sew and quilt know the feeling of an empty spool – or perhaps these types of revelations just hit me out of nowhere and I have to write them down before they fill my MS brain with stuff so I can keep my brain filled with important things – like the schedules of my children’s summer activities (which I forget daily).

Hence, the empty spool beauty.  While looking at an empty spool, I smile at how many stitches I have used with that spool.  How many creative outlets I’ve used with with that spool of thread.  How many people I have helped put a smile on their face with the quilted projects from that spool of thread.  And although I will eventually need to replace that spool of thread, I do so with glee.  I will get a new spool of thread and can once again piece quilts, quilted projects, hand-sewing projects and continue to share the love from my quilted heart.

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An empty spool is a thing of beauty – old or new, there are so many metaphors that describe an empty spool of thread.  The best one I can use right now is JOY.