March is National Multiple Sclerosis Awareness Month

I will no longer be silent about the disease that lives within me. I have alienated enough people – friends and family alike – just because they don’t like to hear about my MS, they’re afraid they’ll catch it from me, they want to sweep it under the rug. You name it, I’ve heard it. Excuse after excuse about why they no longer wish to speak to me or listen to me. And it all has to do with their perception of multiple sclerosis, or the reality of me having multiple sclerosis, or whatever.

Get over your-selfish selves! I am the one suffering with this disease, not you! Or you! Or you!!! My family is the one that has to see me living with MS, not yours! Though we can agree on one point – I don’t WANT you in my life if any of the shoes mentioned above fit.

One of the issues that I face each and every day is stress. MS and stress don’t mix. At least not in my world. The goal in our household is to keep me stress-free, if at all possible. That means no arguments, no ugly words thrown at others, no stressful anything. However, you can’t stop stress, it’s just not possible.

So what happens when I’m stressed? Last year my younger brother passed away. I had a migraine for five or six weeks afterwards. EVERY. SINGLE. DAY. Nothing helped. Not prayer, not medicine, not sleep, not light, not dark. Nothing.

A few months ago I was stressed, too. At that time, I had just started on a new anti-migraine medication and it seemed to have been doing its job. So my MS body decided to step in and ramp up other painful symptoms – namely severe muscle spasms and the sensation that my feet were on fire from the inside out. When both of those hit me at the same time, I end up in the bed. I am maxed out on the medication I take for the muscle spasms so there’s not much else I can do except take a pain pill and I *really* dislike taking those except at bedtime. I can take an extra medicine for the nerve burning sensation, it only makes me sleep longer than I normally would. And I already sleep enough! MS causes fatigue. Most days I nap for three to four hours, and even at that, my husband still has to wake me up. However, more stress piled on top of the existing stress last week and the migraine finally started throbbing, waking me from my nap. It lasted just three days, until some of the stress was taken off my shoulders.

MS awareness is something my immediate family may not like but they have to deal with it daily. As do I. So when MS awareness MONTH rolls around, the least others can do is to stop and listen to those who have multiple sclerosis, and perhaps find ways to help ease their burden in small or big ways. Give an ear, m’dear!

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    “MS Pillars of Strength” Quilt Block

    As part of my American Quilter “A Year of Giving” series of articles throughout AQ’s 2016 magazines, I have had the distinct pleasure of communicating with some wonderful quilters about the charities they represent.  I have also been humbled when those charities ask *me* for a contribution toward drawing in more quilters by designing quilt blocks for their volunteers.

    My March 2016 article focused on “Quilting for Multiple Sclerosis.”  While I have vowed that I will not speak of the struggles I (and my family) have faced personally from my MS, it still remains a subject that is near and dear to my heart.  And definitely worthy of my time to pursue as a charity.

    For my “Quilt Blocks for MS” (a Facebook Group) contribution, I designed a quilt block using my own Sew n’Slash™ quilt method to make my “MS Pillars of Strength” quilt blocks.  Orange is the predominant color because that is the color associated with MS.  But purple and green are also colors we associate with MS so those were the three main colors I stuck with for my quilt blocks.

    You can download my free pattern for this quilt block by clicking on either one of the photographs above.

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      Personal Quilt Records

      Why didn’t I think of documenting who and where my quilts went 30+ years ago when I started quilting?  My answer is that I didn’t think of it back in the days of my early quilts.

      After a few years, I did start to take photos of the quilts and afghans I made.  Unfortunately, I didn’t get name the photos so I could remember just who the gift went to.  So I have a stack of photos as a reminder, but I am not sure I could tell anyone who the items were given to.

      After I was diagnosed with MS and we realized the extent of the loss of my short- and long-term memory problems, I started asking the recipients of my quilts to take a digital photo and send it to me, so I could refer back to it and know who my quilts went to.  Unfortunately, my request hasn’t always been honored.

      There’s also a reason to document your quilts if you ever need to show your work to someone who is interested in purchasing or commissioning a quilt from you.  The stack of photos I have has been passed along to others many times and many quilts have been made based on quilts I had made in the past via those photos.

      But, here are a few suggestions for documenting quilts (or any type of handmade gift) that you make and give or gift away:

      1. Photo album:  A photo of the finished quilt before it is sent to its new home, plus a photo of the recipient (if possible) with their new quilt.  But take this one step further and write or type a little note, adding the information on where the quilt went and who it went to.  A date would be great, too.  If nothing else, take a photo of the tag on the quilt, then you could eliminate any further need to write anything.
      2. Write out information about your quilts.  This is a pretty thorough list items to help you:  This is even a more thorough form you can print and use:
      3. Personal Quilt Registry“, a book written by Lynne Fritz, offers a seemingly excellent opportunity to keep a record of your quilts – not just what you’ve gifted away but also those you have kept.
      4. Make a quilt journal:
      5. There’s also software you can purchase and use on your computer to document your quilts:

      There are many options for you to choose from to help you keep a record of your quilts.  What’s your favorite way?

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        What a Feeling to Pay it Forward from a Simple Goal!

        I really do not like to call attention to myself for sharing the talents and gifts I have been gifted with and then paying it forward with donations.  I believe we are to give without calling attention to ourselves.  But a goal was reached this year, despite everything, and I am extremely happy that I was able to do what I set out to do.  My goal was to make a quilt top a month for our church’s Lutheran World Relief quilt efforts.  I didn’t do it alone.  Far from it.  My secret special person, who has sent me $20 a month since I was diagnosed with an autoimmune disease four years ago, played a part in this goal.  I used most of those funds from 2014 to purchase fabric with.  My foster mother played a part in this goal.  She visited our house in November and she pieced three of the quilt tops for me.  My family played a part in this goal.  They allowed me the time to cut and sew these quilt tops together.  And with every single quilt top I pieced, I prayed for whomever and whatever was on my mind – it is always my special time to reach out to God with each stitch I made.

        A goal was reached.  By me.  In the four years since my diagnosis, I have not been able to make a goal and fulfill it.  Too many distractions, too many doctor’s appointments, too many extracurricular activities, too many painful days – all of that adds up to not enough time, energy or gumption for me to deal with any goals I may have had.


        One goal down, hopefully many more to follow.

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          Four Year Anniversary of Living with Multiple Sclerosis

          Today marks the four year anniversary of my MS diagnosis.  You can read about my previous yearly updates herehere, and here.

          It was recently pointed out to me that whenever I wrote something about my MS, the news was always worse than the previous note.  And the previous note was worse than the note before that one.

          At this point, I am inclined not to say anything because I *do* realize people turn a deaf ear (or blind eye) to news that is always bad.  Frankly, I have nothing good to say about my MS, either.

          This will be my last MS anniversary post and my last post regarding living my life with MS.

          MS has broken me.  But it has not broken my faith nor my relationship with the man who promised to love and cherish me, in sickness and in health.  He and I will weather this storm, with the help of God and prayers from those who pray for me.  Always with the help of God.

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